How Much Do We Really Need to Know about Sperm & Egg Donors

Dawn Davenport

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Genetic testing for sperm donation and egg donationOne of the questions we received for yesterday’s Creating a Family show on Genetics 101 for Sperm and Egg Donation basically asked why not map the genome of any potential donor to rule out any possible problems. It kind of made my chuckle.

I’m definitely a “more is better” kind of gal when it comes to information, so I understand where the questioner is coming from. The reason her question made me smile was that I wonder if she “required” genetic mapping of her husband or partner before they got married or started thinking about kids.

The good news is that the price of genetic testing is dropping rapidly, and the experts on the show predict that we’ll see more genetic testing in the future, although likely not mapping of the genome any time soon.

I highly recommend this Creating a Family show for anyone considering sperm or egg donation. They did a great job of explaining what intended parents need to think about and what options are available. Genetic science is pretty darn amazing.

 

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21/07/2014 | by Dawn Davenport | Categories: Blog, Infertility, Infertility Blog | 88 Comments



88 Responses to How Much Do We Really Need to Know about Sperm & Egg Donors

  1. OK guys, let’s not move the discussion from the previous blog (Donor Conceived Adults Speak Out) to this blog. We’ve worked over that topic thoroughly in the extensive comments to that blog, so if you don’t have anything specific to say about this Creating a Family show on Genetics for Sperm and Egg Donation, don’t comment.

    (Don’t worry, I promise there will be other chances. We’ll be having researcher Dr. Susan Golombok on an upcoming show in September to talk about the Mental Health of Donor Conceived People and Families. So save your thoughts for the blog that will follow that show. :-))

  2. anonymous says:

    “So why test for cystic fibrosis or STD’s or other genetic disorders?”

    Down syndrome, cystic fibrosis and STD are much more common!!!

    Genetic disorders are much more common!!!

    Look at the MATH. It’s about understanding probabilities.

    High schools should teach a mandatory semester of basic statistics.

  3. a says:

    86 Greg
    So why test for cystic fibrosis or STD’s or other genetic disorders? Dr’s are prohibited from assisting related people in conceiving but they are not prohibited from assisting people with genetic disorders from conceiving. It’s like the thing with the highest risk

  4. Greg says:

    Marilynn,

    It’s a waste of the doctor’s time for them to do so when there is zero proof it’s a risk. It’s like a doctor being required to have an MRI done every time a person feels any tightness in a joint. It’s creating a straw man argument. It’s like the people who still believed the world was flat after Columbus discovered the Western Hemisphere.

  5. marilynn says:

    Oi vey its already a rule they just dont test unless you ask. Don’t ask if you dont want.
    I don’t think anyone should stop people from doing it together if they want but I do think doctors should check before they help them do it since they are already not allowed to assist because of the risk of birth defects. Ya’ll will take and twist any statement that does not fit with you getting with the ability to control the identity and relationships of a minor that has less rights and protections than other minors.

  6. anonymous says:

    “If it’s logical to worry that offspring might inadvertently hook up with an unknown sibling”

    It’s not logical. Not out of a mobile population of 320 million.

    It makes way more sense to worry about being hit by lightning. It makes even more sense to be terrified to get into a car, considering the rate of car crashes.

    It’s literally not rational to worry in this way. It’s coming across as irrational, obsessive thinking about incest for some psychological reason.

  7. Greg says:

    “If it’s logical to worry that offspring might inadvertently hook up with an unknown sibling why would it not be logical to think that a donor might hook up with one of their relatives just as easily if they can’t physically see who they are going to conceive with in order to exclude their relatives?”

    Marilynn,

    While it might be logical to have this assumption it is still not practical in reality with the screening process as well as the child photos of donors that are provided to intend parents. If this was a big issue we’d see it more from the anti donor conception crowd who love to exploit those stories.

  8. Anonymous says:

    If it’s logical to worry that offspring might inadvertently hook up with an unknown sibling why would it not be logical to think that a donor might hook up with one of their relatives just as easily if they can’t physically see who they are going to conceive with in order to exclude their relatives?

    That same element of unknown exists for donors and recipients as does for offspring and half sibs and their cousins and other relatives who they don’t know.

    It is logical to be concerned about offspring and their unknown relatives reproducing or there would not be donor offspring limits or recommended limits to prevent inadvertent incest.

    You are not making sense. She’s not obsessed with the topic, she did not make it up. It’s on the radar already it’s just not being managed very well at the front end with screening as they do for other concerns.

  9. Justin says:

    Anonymous (77),
    There is an obsessive quality about any hard-core prejudiced person. Anti-Semites see ‘Jewish conspiracies’ everywhere, racists can’t stop talking about how horrible people of African descent are, and heterosexists forever suspect all gays are up to something unnatural. Marilynn simply follows her own hate-obsession by explaining to us, repeatedly, how horrible (in this case incestuous) non-biologically-related families are.

  10. anonymous says:

    “It’s a real anomaly for a potential donor to have positive test results returned.”

    NO.

    It’s not an anomaly for someone to come back with a positive STD test. That’s far more frequent then showing up as a near relative. You’re disconnected from the statistical likelyhood on these matters.

    It’s also quite common that everyone carries 5-7 recessive genetic disease mutations. That’s not uncommon.

    What’s uncommon is the MATCHING. Recessives rarely match. And we’ve already said, yeah, it’s as unlikely as it is for any random hook-up or married couple. People can chill out.

    But it’s a LOT more likely that you’ll get a matching recessive then out of 320 million people you’re randomly going to end up with your close relative.

    You aren’t running the numbers accurately. You’ve got obsessive thinking with incest that isn’t logical.

  11. Greg says:

    “Call it obsessive, call it discriminatory, but the chance that a related male and female would have offspring with a birth defect is so astronomically high that the ASRM prohibits physicians from assisting fertilization when the male and female are related.”

    Huh? This makes no sense. People who are related aren’t conceiving these children through donor conception. It just isn’t likely to happen. I’m sorry your argument is grasping at straws here.

  12. marilynn says:

    Anonymous 77. “These repeated concerns about incest are irrational. Clinically it’s coming across as obsessive thinking”

    The number of potential donors excluded for cystic fibrosis, dirty drug tests and std’s is so small that statistically it hardly warrants the cost of the tests. The vast majority of potential donors will pass those tests with flying colors. It’s a real anomaly for a potential donor to have positive test results returned. If those tests were optional instead of mandatory it would allow people to make their own decisions about whether or not the cost of the testing was worth it to them based on the very slim chance of a positive result and an even slimmer chance that the positive result would actually have an impact on the health of any offspring born.

    ASRM prohibits physicians from assisting conceptions when the male is a relative of the female because of the statistical likelihood that their offspring will be born with a birth defect. Call it obsessive, call it discriminatory, but the chance that a related male and female would have offspring with a birth defect is so astronomically high that the ASRM prohibits physicians from assisting fertilization when the male and female are related.

  13. anonymous says:

    These repeated concerns about incest are irrational.

    Clinically it’s coming across as obsessive thinking.

  14. Anonymous says:

    Justin I said ultimately the study comes full circle and joining the misattributed paternity group with the group related to anonymous AID and say that combined its still less than deliberate first cousin mating “We estimated that in the future, when AID has been in practice for several generations, out the 820 000 annual births in France, respectively, 6 and 25 births will be consanguineous through an unknown common ancestor related to anonymous AID and to a false paternity, both of which are negligible when compared with the 1256 children born from first-degree cousins.”

    But do you get that the study limits the types of relationships in the AID group to half sibs and leaves the number of relationships in the non aid group wide to all unknown relatives so that the probability in the non aid group would be greater due to the variety of kinship relationships considered? If it was non aid half sibs to aid half sibs it would be a somewhat balanced study. The other problem is that AID is misattributed paternity and the aid group is also exposed to the risk of mating with relatives of all sorts due to misattributed paternity, they too could hook up with a cousin or uncle but that was excluded in the study.

  15. Anonymous says:

    The topic we are discussing is donor conception. There is no sexual intercourse. Thus there is no mating. Justin’s point is that why should couples who attempt to have children through intercourse or just randomly have sex be held to different standards. If the idea is to be equal and fair then shouldn’t those people go through all the tests being suggested before they engage in intercourse?

    I think it’s a fair question and point that is not defensive one bit but something that one needs to consider before making these types of arguments.

    Fair? Do you think it’s discriminatory that doctors are required to test for and exclude donors with cystic fibrosis or stds when that is not required for people who have sex? When a third party is involved in a conception that third party is a physician who has to adhere to safety and ethical standards or they are not supposed to participate. So is it discriminatory that there are certain physical conditions they screen for in order to determine if they can assist that couple in reproducing? And by couple I mean the two people who want to reproduce together the two consenting to the fertility treatment and the donor is one of the two people.

    None of these rules or regulations or tests has anything to do with people who are infertile. There is no action upon the infertile individual related to any tests that the ASRM or FDA require or those which are optional. I don’t see how its discriminatory.

  16. Greg says:

    “. If your child were to read that contract at some point or any of hundreds available on line just like it, they can read in black and white that their biological mother abandoned/terminated/relinquished her parental rights and responsibilities for them.”

    See this is where I think this perspective comes from a place of hoping that the child grows up angry and vocal just to make a point. IMO that is so wrong especially in a discussion that is about testing for genetic diseases in donors.

    Justin,

    Could I ask that you reach out to me via my blog (linked in my name here)? I’d like to have an offline conversation. Thanks.

  17. marilynn says:

    Justin
    You said
    “The people who elaborated on the danger of incest in this post have been the ones who invented “abandonment issues” among donor conceived children,”

    Justin read your own contract with the woman you reproduced with and it will cover at length her desire to abandon/terminate/relinquish her parental rights and responsibilities for the offspring she conceived with you. If your child were to read that contract at some point or any of hundreds available on line just like it, they can read in black and white that their biological mother abandoned/terminated/relinquished her parental rights and responsibilities for them. I certainly did not invent the issue I would not want to be the author of those words. The only positive in that truth is that at least she consented and you did not wind up in this situation without her express consent or approval

    claimed that these families are not true families, and so on.
    The invented danger of incest is just another form of attack and stigmatization.
    So no. I do not think I am overreacting.

  18. Justin says:

    Anonymous (62)
    You asked “How much a person needs to know?”
    My answer – as much as they decide they need to know. It should be an individual decision for parents by donor conception in the same way it is an individual decision for parents by sexual reproduction.
    Parents by donor conception are in a privileged position to be able to screen for family history and genetic disorders prior to the creation of sexual or emotional connection with their partner. Whether they choose to use this opportunity or not is entirely up to them, and should be the business of nobody else.

  19. Justin says:

    Anonymous (61) and Greg (63).
    Thank you, Greg, for your support.
    Anonymous, you wrote “I believe you are overreacting”. Considering the context of the comments, I do not think I am.
    There is zero evidence of incest in anonymous donation. There is zero evidence of any higher prevalence of mental or physical disorders with children born of anonymous donations. There is zero evidence of higher prevalence of any genetic disorder among donor-conceived children. (The only evidence we have is that these children enjoy better parenting). Therefore, there is absolutely no justification in demanding or encouraging any specific tests of that minority population.
    More-over, the idea that anonymous donation leads to accidental incest due to lack of visual identification of the donor makes no sense, since almost all agencies provide pictures of the donors.
    Expressing the attitude that they should be screened for incest is another way of stigmatizing such families as having reproduced in “a wrong way”. Claiming a minority population has more frequent incest is a well established tactic that has been used in the past in propaganda against many minority groups, including Jews, Romani people, Mormons and African-Americans. The people who elaborated on the danger of incest in this post have been the ones who invented “abandonment issues” among donor conceived children, claimed that these families are not true families, and so on. The invented danger of incest is just another form of attack and stigmatization.
    So no. I do not think I am overreacting.

  20. Justin says:

    m (69)
    The study did not consider descendants of anonymous donations as part of the misattributed paternity group, as it states clearly: “The expected number of unions between related individuals is roughly four times lower among the descendants from anonymous AID than among those descended from false paternities”.
    Moreover, the study concludes with this very clear statement: “At this stage, the claim for the disclosure of identity in gamete donation because of a supposed consnaguinty increase and public health hazards in the general population appears to be an irrational assertion.”
    I think will stop arguing with you over the details of the study, and focus on the underlying subtext in my next comment.

  21. m says:

    Anyone dig into the study Justin cited? What are everyone’s thoughts on saying there will be fewer incestuous births between donor siblings than by non-donor offspring with not just siblings but any unknown relative? Essentially comparing a group restricted to sibling only incest with a group involved with incest of any kinship relationship. What do people think of the fact that donor offspring are actually part of the misattributed paternity group they are compared against and that they ultimately join the two groups together and say the number of inbred births is lower than intentional 1st cousin inbreeding?

  22. m says:

    Greg should all people be tested prior to conceiving? Absolutely not and that includes individuals conceiving with people they don’t know anonymously. It should be entirely up to them who they make kids with. No mandatory testing.

    However if medical professionals are involved and there are already specific situations that their professional organizations or the fda prohibit them from being involved in due to safety issues for the party conceived then It’s reasonable to say that ASSISTANCE in reproducing be undertaken by qualified professionals adhering to those safety laws. What I’m suggesting in terms of physicians having to make sure they are not helping related individuals reproduce is consistent with the fact that their own professional organization says to do so is against the rules anyway.

  23. m says:

    Justin the reason that anonymous donor conceptions should be screened for relatedness is not to prevent the two people from conceiving a child if they so desire, it’s to alert the physician to the relatedness of the parties because assisting closely related individuals in reproducing is described by the ASRM as being prohibited because of the risks to the person who would be conceived.

    So the ASRM has policies against assisted reproduction of closely related people. It requires physicians to screen for STD’s. Is it that unreasonable to suggest that they screen out the situation that they are not allowed to assist in? The people are still free to reproduce if they want without the physician’s assistance. Ethically it is deemed too great a health risk to the person being conceived so they are not suppose to do it. I’m not that far out on a limb here.

    I’m also not suggesting differential treatment of related individuals as they could reproduce together freely nobody is stopping them by not assisting them since they are two able bodied, fertile people capable of reproduction they could pursue other methods not involving a physician. Maybe there are people out there that really would like to find an anonymous donor whose closely related to them so they could produce offspring in a blind incestuous situation of sorts. Maybe that group would be really outraged at not being assisted. They should take it up with the broader ASRM policy against assisting relatives conceiving though.

  24. m says:

    Greg, on July 29th, 2014 at 8:16 am Said:

    “I’d never suggest that anyone not be allowed to mate with who they want to mate with. ”

    Marilynn,

    “The topic we are discussing is donor conception. There is no sexual intercourse. Thus there is no mating. ”

    Oxford dictionary says that a breeding partner is a mate. You don’t have to be married or in love to mate, its a really unemotional term actually it implies no emotional connection at all I’m surprised that anyone here would take exception to the use of that term.

    All human reproduction is after all sexual reproduction. Donor’s are human beings are they not? And they are conceiving correct? They can’t conceive alone, they have to reproduce themselves together with another person right? A donor chooses to select people to mate with in a particular fashion with the assistance of a cryo bank or other middle-man and same goes for those they mate with. They both are supposedly consenting adults who want to have offspring together. They just don’t want to raise their offspring together.

    Justin’s point is well taken they should not be held to any different standard than anyone else of course not. They are two consenting adults free to reproduce together if they want and nobody should interfere with that. If people are looking to find out about the person they are making a baby with and they would like to screen out their relatives then they should consider having a dna test against them.

    Again if two related people want to conceive together that should be up to them. ASRM already has a policy against physician members assisting incestuous conceptions so not helping them conceive is not the same as preventing it I suppose. If its something the medical profession considers too dangerous to be involved in then I think they should compel their members to exclude the possibility of close relatedness prior to assisting. But that’s just my opinion.

  25. m says:

    Anon. 64 I completely agree that people don’t go testing the genome of their hookups and should not chuck their kids out for lack of extensive testing. The one thing a person does get with a hook up is a visual and they can exclude at least those individuals who they’ve been told they are related to. So bare minimum if no other testing were done it would seem a person would at least want to be in the same position they’d be with a hook up they could see to visually exclude a known cousin or niece. If any testing is done it seems the minimum might want to get you to about where you’d be if you were hooking up in a bar anyway. Or not it’s up to the individuals who make the kid together if they want to screen out their relatives or not.

  26. anonymous says:

    “People commenting have gotten very defensive when the topic was how much a person really needs to know. Where does everyone stand on that question now?”

    Depends if you want to do “more” and be “safer” then the average pregnancy.

    Lots of pregnancies result from “hook-ups” where no one is thinking about genetic disease. Lots of family histories are incomplete or are hiding dangerous recessives.

    Despite this, most pregnancies result in a healthy child.

    No one would abort because they hadn’t done a “complete family health history” or tested for recessives before getting pregnant. That’s insane.

    If you’re kind of neurotic about disease, you can do testing recommended by the geneticists in the pod-cast. It doesn’t hurt anything to test.

    It’s a little neurotic to worry excessively. Pregnancy means you relinquish control.

  27. Greg says:

    “I’d never suggest that anyone not be allowed to mate with who they want to mate with. ”

    Marilynn,

    The topic we are discussing is donor conception. There is no sexual intercourse. Thus there is no mating. Justin’s point is that why should couples who attempt to have children through intercourse or just randomly have sex be held to different standards. If the idea is to be equal and fair then shouldn’t those people go through all the tests being suggested before they engage in intercourse?

    I think it’s a fair question and point that is not defensive one bit but something that one needs to consider before making these types of arguments.

  28. Anonymous says:

    People commenting have gotten very defensive when the topic was how much a person really needs to know. Where does everyone stand on that question now?

  29. Anonymous says:

    Justin
    I believe you are over reacting. The topic of the post is what does a person really need to know about a donor before making their final selection.

    I’d never suggest that anyone not be allowed to mate with who they want to mate with. The suggestion here is try and get the information you want to get, to screen out things you’d want to screen out. People who would want to avoid making a child with one of their relatives have an opportunity to check. You said you think the clinics would be willing to do it so It should be on people’s radar.

    The suggestion is that one would attempt to be as informed as they would want to be under normal conditions when they could visually see and know the individual they are having offspring with.

    Don’t turn the issue into something it’s not.

  30. Greg says:

    Justin,

    The term I like to use is “bio family elitism”.

    That is a great point regarding infertile couples and the time and energy they put into having a child. They put more time and effort into it than fertile couples yet they are criticized for every decision they make. The reality is they think more about the topics being discussed than they’re given credit for.

  31. Justin says:

    And we’re back at it again. I will use some easy analogies.
    Imagine a law stating that all Jews should be checked periodically for lice; Or a law requiring all children of African descent to be screened for mental retardation upon entering school at the age of 6; Or a regulation requiring all non-heterosexual people to be checked for sexually-transmitted-diseases. Do these laws and attitudes make you cringe?
    There is nothing particularly horrible about being screened for lice, mental retardation or STDs. It can even be helpful, as it will allow treatment. However, singeling out a particular disadvantaged minority for such screening is stigmatizing, discriminatory, and reeks of Anti-Semitism, racism or heterosexism. (Plus, turning it into a law is an impingement upon the individual’s right to privacy.)
    The same feelings should be evoked by any idea that all anonymous donor conceptions need to be screened for incest. There is no evidence that there is any need for that, just a stereotype. Singeling out people choosing anonymous donors to be screened for incest is stigmatizing toward this particular minority, and thus should be seen as discriminatory and fertilist.

  32. Greg says:

    “Good to know how you feel about the folks who chose adoption to avoid passing on genes that could affect their children…and yes, that is one of the reasons some choose adoption.”

    It’s a reason that a couple could choose to not try to have children or pursue fertility treatments. But it has nothing to do with why they choose adoption. They choose adoption because they would like to start a family or add to their family. At least for me personally, it is part of the reason we decided to not pursue any fertility treatments. But it has nothing to do with whether or not my wife and I decided to pursue adopting.

  33. Anonymous says:

    It’s almost like the ASRM or the scholars behind these studies are mocking the intelligence of the general public. The study wraps up by including inbreeding of donor offspring with the group for misattributed paternity (because its the same thing)and says that it’s still less than the number of inbred births done deliberately with 1st cousins. None of that is helpful information to people hoping to avoid inbreeding themselves or hoping to prevent their children from inbreeding with their unknown relatives. Obviously the way to reduce the likelihood is to know who you are mating with and for your kids to know as well. When you choose not to actually know them you can test them.

    That is the number 1 thing you need to know about a donor before making a kid with them.

  34. anonymous says:

    “In totally anonymous donation, one can’t even be sure whether there is any truth to those histories – they could be from anyone. Anything is possible under the cloak of anonymity.”

    The pod-cast hosted doctors who offered tests to screen for 100 common genetic diseases.

    I do not understand your faith in family history. Recessives are commonly hidden in extensive family history. The math is clarifying in this arena.

    “You do understand the meaning of “as much as possible”? That does mean that I realise that things aren’t always totally possible but that we can do our best to reduce those risk/discomfort as much as we possibly can.”

    I do not think you understand the mathematical risks of the average pregnancy produced by two people with apparent “clean” family health histories.

    We are all mutants. The recessives contained in any given genome rarely appear in extensive family health histories.

    By your rationale, every person should test for the 100 most common recessives prior to engaging in coitus.

  35. anonymous says:

    “Anonymous #49… “Normal families do not analyze the diseases of cousins and grandparents prior to pregnancy.””

    “Good to know how you feel about the folks who chose adoption to avoid passing on genes that could affect their children…and yes, that is one of the reasons some choose adoption.”

    You misunderstood my comment.

    My comment referred to the fact that the average person with no known disease does not screen for the 100 most common recessives prior to coitus. As one of the researchers stated, “We are all mutants.”

    It is an error to assume one one has a clean genome because one has a clean family history. Most people are unaware of their 5-7 recessives that they carry in their genome.

    Family history, in the majority of cases, will not reveal recessive mutations.

    The majority of recessive mutations will not show up as a result of family history. 2 people must carry the recessive. If both progenitors carry a recessive there is a 25% chance, NOT an 100% chance, that the disease will appear in any given embryo.

    Most recessives do not appear in family history in the last 4-5 generations. It is not uncommon for no recessives to appear in extensive family histories.

    Even with extensive family history every pregnancy is a roulette reel of danger.

    I do not understand your reference to adoption. Your comment indicates you may be unaware of new IVF research methods. Couples may avoid recessive diseases through pre-implantation embryonic testing.

  36. marilynn says:

    Justin in 45 you said people might have sex with someone and not know they’re related because of 1. Loosing Touch 2. Miss-attributed paternity 3. Unknown paternity.

    I do agree that this is true for people who have sex to have children but equally likely for those who reproduce anonymously. It’s the individuals that a person WOULD recognize as related IF they could see them that can inadvertently be mated with when two partners opt not to know one another prior to reproducing.

  37. marilynn says:

    I think that it should read more like inadvertent inbreeding between donor offspring and their unknown relatives comprises x% of estimated inbreeding due to miss-attributed paternity and/or maternity.

  38. marilynn says:

    Justin hey I checked out your study reference but it does not address the potential for unintentional incest between donors and the people they have children with. The study deals exclusively with the likelihood of donor offspring inadvertently having children with their siblings. It’s an interesting study but it does not address the potential for donor offspring to have related parents because they never met before reproducing with each other. My comment on this post has to do with donor’s producing inbred offspring because they don’t know who they are having children with. The ASRM says that physicians *should not* assist relatives in conceiving children together. (granted they don’t say it’s illegal but they say it should be prohibited). They describe acceptable relative donations like brother to sister in-law but take a hard line on donations like brother to sister:”The use of intra-familial gamete donors and surrogates…” “…that replicate the results of true consanguineous or incestuous unions should be prohibited”.
    What we have here Justin is physicians who have no idea if they are assisting related individuals in reproducing when it would cost them less than $100 to know for sure if they were abiding by the guidelines of their own professional organization. Citing ASRM publications to illustrate a point stings a little because while medically accurate they are ethically suspect IMO because they fall short of taking a hard line on anything. If they say helping relatives to conceive children together *should be prohibited* then it *should be* something the medical board can take their licenses for. The doctor does not want to loose a customer so they just avoid knowing the thing that would put the kibosh on their sale. I’m glad you dealt with ethical professionals Justin but maybe you can see that this situation has a lot of room for improvement. People could easily be advised that their first choice was genetically incompatible for reproduction with them and had to be excluded.

    Reading the article you cited answered my questions about what they were comparing to. They compared to deliberate inbreeding between first cousins and they compared to inadvertent inbreeding as a result of miss-attributed paternity defined as descending from a common male ancestor rather than descending from the same father. This means they were comparing the kin specific situation of donor offspring inbreeding with unknown siblings to non-donor offspring inbreeding with unknown siblings, cousins, aunts uncles, nieces, nephews, parents, grandparents etc who descend from a common ancestor unknown due to attributed paternity.

    The first comparison goes without saying, people who are trying to inbreed with their first cousins and know they’ve chosen a first cousin to breed with will be statistically more likely to inbreed. They are in control of who they’re mating with so yes they are more likely to have inbred kids. The second comparison is odd because donor offspring have miss-attributed paternity, maternity or both so they are actually part of the group of individuals they are being compared against. At least one of their bio parents has not been attributed with having conceived them and so none of that bio parent’s relatives knows the kid and the kid does not know them. The only difference with a donor is that they often have many offspring whose conceptions are not attributed to them where adulterous affairs or one night stands are not as efficient producing large numbers of offspring as cryobanks, sibling groups of non donors would tend to be smaller than donors. So when you look at the likelihood incest due to misattributed paternity I cannot see how one would exclude donor offspring from that group. I also find it interesting that they calculated the risk incest between donor siblings with the risk of non-donor offspring against multitudes of different relatives that might descend from a common male ancestor unknown due to miss-attributed paternity.

    In a country like France that may still impose the 10 offspring limit they are calculating donor offspring risk of inbreeding with 9 half sibs only and are not taking into consideration any of their other unknown relatives. They compare that situation to the percent of the population who might be cousins or half cousins or half aunts uncles nieces and nephews and say the likelihood of the sibs hooking up is less likely than non donor offspring to mate with all those other types of unknown kin. Draw your own conclusions but they are comparing apples to apples when miss-attributed paternity occurs for donor offspring

    Also Justin the study ultimately combines donor offspring inbreeding with the miss-attributed paternity inbreeding and says its still less than the number of inbred kids born to 1st cousin couples on purpose. So after reading this and the ASRM position I am still confident that anyone hoping to avoid producing inbred children should know if they are related to the person they are reproducing with. Therefore in response to the post one of the things a person should know about a donor is if they are related – so test for that.

    Excerpted from the article:

    ” The actual incidence of consanguinity due to AID was compared with that resulting from the two other main sources of consanguinity and recessive diseases, i.e.

    voluntary unions between related individuals or

    inadvertent unions between the offspring of a common unknown male ancestor (false paternity).

    From these data, we estimated that expected unions in France between half sibs per year are 0.12 between offspring of sperm donors (1.2 every 10 years)

    and 0.5 between offspring of common male ancestors through false paternity (5 every 10 years).

    More generally, the inadvertent unions between false paternity offspring are roughly four times more frequent than those resulting from anonymous AID.

    We estimated that in the future, when AID has been in practice for several generations, out the 820 000 annual births in France, respectively, 6 and 25 births will be consanguineous through an unknown common ancestor related to anonymous AID and to a false paternity, both of which are negligible when compared with the 1256 children born from first-degree cousins. About 672 children per year are born with a recessive genetic disease due to the panmictic risk and additional affected cases due to consanguinity would be 34.54 for first-cousin offspring, 0.33 for offspring of individuals related due to false paternity and 0.079 for offspring of individuals related due to anonymous AID. Anonymous AID would therefore be responsible for 0.46% of consanguineous births and for 0.01% of recessive diseases. Therefore, the effect of anonymous AID on half-sibling unions, consanguinity and recessive disease incidence can be regarded as marginal.”

  39. TAO says:

    Anonymous #49… “Normal families do not analyze the diseases of cousins and grandparents prior to pregnancy.”

    Good to know how you feel about the folks who chose adoption to avoid passing on genes that could affect their children…and yes, that is one of the reasons some choose adoption.

  40. cb says:

    U”sing a donor may decrease risk. Extensive health histories that includes grandparents and cousins allows people to exclude genomes that carry known mutations. Further genetic testing decreases the unknowns and the risk when compared to non-donor pregnancies.”

    In totally anonymous donation, one can’t even be sure whether there is any truth to those histories – they could be from anyone. Anything is possible under the cloak of anonymity.

    “Thus, I would want to minimise the risk and discomfort for my hypothetical future child as much as possible.”

    You do understand the meaning of “as much as possible”? That does mean that I realise that things aren’t always totally possible but that we can do our best to reduce those risk/discomfort as much as we possibly can.

  41. anonymous says:

    It is not rational to ignore the simple math involved in these calculations.

    All pregnancies carry risk that the child will inherit a deadly genetic disease. The question is not how to eliminate risk from all pregnancies.

    Statistically, if testing is done, there is less risk that “donor” babies will inherit genetic mutations.

    Normal families do not analyze the diseases of cousins and grandparents prior to pregnancy. People routinely pass down mutations in their families. All pregnancies are a roulette reel of danger. Non-anonymity does not lower risk because of these unknowns.

    Using a donor may decrease risk. Extensive health histories that includes grandparents and cousins allows people to exclude genomes that carry known mutations. Further genetic testing decreases the unknowns and the risk when compared to non-donor pregnancies.

    What does this mean in mathematical terms?

    The average risk incurred in “donor” pregnancies should be less then the random risk in “non-donor” pregnancies.

  42. anonymous says:

    “Thus, I would want to minimise the risk and discomfort for my hypothetical future child as much as possible.”

    By this rational, all people should test for recessive genes prior to any pregnancy.

    It is irrational to eliminate risk and discomfort “as much as possible.”

    All labor is potentially dangerous. C-sections are less risky. C-sections minimize the risk and discomfort to the child. V-birth carries risk.

    Most people do not advise that all women get C-sections. Why? Statistically the risk is manageable. It’s rare that a v-birth will damage a child in a healthy, low-risk pregnancy.

    Life decisions are a calculation of risk and statistics.

  43. Greg says:

    “In a way, though, lack of anonymity would mean that donors might also end up self-regulating – eg if one wanted to donate and one knew there was the possibility of contact, then one would limit their donations – you wouldn’t find those large numbers as mentioned in a previous article.”

    I believe a non anonymous donor is going to be a better quality donor who is engaged in their role as a donor. By that I mean they’ll be more likely to update their health records and be available to the children if need be.

  44. cb says:

    “I am sorry for your bad luck.

    In rare instances plane crashes will occur. I make decisions according to statistical risk. I don’t play the lotto, and I will fly on commercial planes.

    Low risk does not mean no one will “beat the house” with the odds. Someone unfortunate people will get hit by lightning and die in plane crashes.

    In calculating chances, I want to know the odds. How rare is the risk?

    Multi-variable outcomes are harder to predict and more rare then single variable.”

    At the same time, I would be more likely to take a risk if it were my own life I was risking than I might if it were someone’s else’s life (i.e. my hypothetical future child’s life). Thus, I would want to minimise the risk and discomfort for my hypothetical future child as much as possible.

  45. Justin says:

    Anonymous (41),
    I am not sure I understood your message correctly. If I got you right, you wondered how is it possible that conception through gamete donation carries with it less risk of incest and inbreeding than sexual conception.
    I am certainly not an expert in explaining why accidental inbreeding and incest is prevalent in sexual reproduction. However, according to my readings, which are not comprehensive, incidents of reproduction between relatives who are unaware of their familial relations occur due to three main reasons:
    1. Losing touch – Meeting someone who is a family member without knowing they are such, as the families separated and connections got cut off.
    2. Misattributed paternity – Studies estimate that 5%-10% of children are conceived by adultery and raised by the women’s male partners without his knowledge of the adultery. In those cases, neither the child nor the father knows that the biological relationship of the child is with a different man, and no-one aside from the mother and biological father knows about the child’s biological relationships. In this situation, the child of adultery may not even suspect the possibility that he has fallen in love with a person who is biologically related to him, since he believes he knows all of his biological relations.
    3. Unknown paternity – A significant percentage of birth certificates (last I read was about 10% in the United States) do not have a father identified. These children may or may not know their biological father, and thus may or may not be able to identify their biological relations.
    Incidents of accidental incest are likely to be particularly common due to reasons 2 and 3, as the biological mother and father are frequently members of the same community, and thus their families tend to belong to the same community.

  46. cb says:

    This article (which seems to be the beginning part of a book) makes interesting reading:

    http://scholarship.law.gwu.edu/cgi/viewcontent.cgi?article=1139&context=faculty_publications

  47. cb says:

    “And that is where I believe the focus should be to educate and regulate rather than ban things. If you ban things it will just create more problems because the desire to create families will always be there. If France isn’t having the issues we are discussing and they have stricter regulations then that’s the model to follow, IMO.”

    I do agree that there should be stronger regulations and better education. Education for both donors and recipients should include the testimony of the donor conceived.

    In a way, though, lack of anonymity would mean that donors might also end up self-regulating – eg if one wanted to donate and one knew there was the possibility of contact, then one would limit their donations – you wouldn’t find those large numbers as mentioned in a previous article.

    Someone said somewhere that fewer people would donate but perhaps it might be more that individual people would donate less.

    Also, in some countries like India where there are very
    few regulations, there are schoolgirls donating eggs to ern a bit of money on the side. I suspect the recipients probably wouldn’t know that, they have probably been told that the eggs are from older women – in the end, who would know?. One has to trust that one’s fertility clinic is doing the rght thing by one. One could have pages of info on one’s donor but how can be sure that that information is true. I am sure that that at least is well regulated in the US but one can’t guarantee that elsewhere in the world.

  48. Greg says:

    “The only way to do a study would be on people who’d found out who their bio parents were and then test. All I was addressing here was selecting an anonymous mate who was not kin.”

    Marilynn,

    But the purpose of the study was to find out if people conceived from anonymous donation were more likely to be involved with unintentional incest. What you would be trying to do is see if those from non anonymous donation. I understand that the results go against your position but it seems like you are trying to find reasons why the study was inaccurate.

    Again, I believe what you learn from the study is that in a country where there are tougher regulations than the US that incest from people conceived from anonymous donations is not an issue. We should be looking to implement regulations similar to that country to address the issue.

  49. Anonymous says:

    Justin I was thinking and yes, it hurt. So how would it be possible to determine if donor offspring had a higher instance of being inbred because donor offspring don’t know who one or both of their bio parents are generally? That’s why I am thinking it’s simply a greater chance they would be because their parents could not exclude their relatives the old fashioned way by recognizing them. If you take information like recognition away the possibility increases. Though, not as much of course as being able to recognize a relative and choosing them because they are related because that is a cultural preference.

    The only way to do a study would be on people who’d found out who their bio parents were and then test. All I was addressing here was selecting an anonymous mate who was not kin.

  50. Anonymous says:

    Justin 34
    What a nice measured response. I like that. People need to have some control over what their doing in life and they need information to make educated decisions; not knowing the person your going to have children with is an incredible loss of control and so I can understand why someone would want to balance the lack of identifying information with a wealth of health and genetic information. I think whatever can get a person closer to the comfort level they’d have if they actually knew the person they were dealing with is sound judgement under the circumstances. Its good you think the clinics would be open to asking if people would be willing to screen out clients that they were related to with a DNA test – if the clients were willing to pay for it. My personal feeling is that close relatedness screening should be a mandatory paid for by the clinic (passed on to the client like they do all the std testing or testing for major hereditary disorders)because it’s such an easy way to avoid their offspring having problems. I recall reading that the ASRM’s guidelines suggest physicians not do close kinship donations that create an incest-like situation because of potential harm to any offspring and so that policy can’t entirely be adhered to if the physicians don’t know if the people are related. So as a matter of professional ethics for the physician it seems to me that it’s almost incumbent upon them to exclude close relatedness before assisting two people in conceiving a child. It’s certainly within their capability to do and if the test costs less than 100 for the average consumer retail I’m sure they could get a bulk discount. Do you see where I’m going with this?

    It’s already the ASRM position for them not to assist kin in reproducing so I think this level of regulation is really a matter of patient safety. http://www.asrm.org/uploadedFiles/ASRM_Content/News_and_Publications/Ethics_Committee_Reports_and_Statements/family_members.pdf

    Thanks for responding Justin. You were nice.

  51. anonymous says:

    “Anonymous comment #21…and I am the anomaly to your assumption that FHH gives you a false sense of security. Mine forecasted exactly what would happen to always healthy me, not just what would bring me to my knees and at what age, but other non-threatening conditions as well that impact my QOL – but of course I didn’t have it to show the risk locked inside my genes so it surprised everyone including my doctors…I’m not the only one and when you have millions of people you will have many of me’s…good luck.”

    I am sorry for your bad luck.

    In rare instances plane crashes will occur. I make decisions according to statistical risk. I don’t play the lotto, and I will fly on commercial planes.

    Low risk does not mean no one will “beat the house” with the odds. Someone unfortunate people will get hit by lightning and die in plane crashes.

    In calculating chances, I want to know the odds. How rare is the risk?

    Multi-variable outcomes are harder to predict and more rare then single variable.

  52. anonymous says:

    People should differentiate between fears that are statistically realistic and an event that is unlikely. Genetic diversity in the USA is huge because of the mobility and the huge population.

    It is not rational for Americans, natural or donor conceived, to fear they will have children with an unknown close relative. American kids go away to University. They don’t stay in the same home town or city all their life. They move around for work and for school.

    There are 320 million people in the United States. Kids relocate a lot more in the States then other small countries. Most countries have only a few large cities. The USA has lots.

    The population of greater LA is more then 1/2 the population of all of Australia. That’s only LA. The USA has lots of cities. USA doesn’t have just 1 large city like Canada.

    I get that some people have irrational fears. Lots of people are scared to fly safe commercial planes. But ask yourself if your fear is statistically realistic. We’re don’t live in medieval European villages where cousins intermarry. Sperm and eggs get shipped all over the USA. It’s more likely an American would win the lotto or die in a tornado.

  53. TAO says:

    Dawn,

    I wouldn’t be freaked out about marrying a distant cousin that was from my great great uncles line. I’m talking about a full or half sibling, first or second cousin, aunt or uncle type relationships. Chances are pretty good most non-adopted or non-DC would know if they were related, or would be told very early into any relationship by an older adult if the family wasn’t close.

    For me: I knew I had close relatives where I grew up – I had no idea who they were, so anyone could have been them.

  54. TAO says:

    Justin,

    Thanks for the results – interesting and the mathematical probabilities are quite likely very low – not challenging that at all. The fear factor though is what the problem is, it’s a valid fear because without genetic testing they won’t know and the possibility exists. So when would it be a good time for a teen or young adult to ask their beau to get tested, to make sure they weren’t related – before they kiss, before they get too heart involved, sex, marriage, deciding to make a baby? Imagine if you will going into every relationship as a teen, young adult with that fear. That will be the reality for some because you can’t dictate that a person have a will worry about it later personality. Logic doesn’t enter into it at all – fear is fear.

    Anonymous comment #21…and I am the anomaly to your assumption that FHH gives you a false sense of security. Mine forecasted exactly what would happen to always healthy me, not just what would bring me to my knees and at what age, but other non-threatening conditions as well that impact my QOL – but of course I didn’t have it to show the risk locked inside my genes so it surprised everyone including my doctors…I’m not the only one and when you have millions of people you will have many of me’s…good luck.

    • TAO, I think you make a good point about how the unknown can cause fear. However, the reality is that many of us are married to distant relatives and have no idea, or do know and don’t care. My mother’s side of the family is replete with double first cousins, and 3rd cousins once removed being married. No one thought anything of it since they lived in a small rural community it was the norm. In fact, it is extremely common throughout the world, albeit less so in our very mobile society. That does not, however, address your point that fear is often not related to reality.

      As as aside: My husband and I were raised in two different states and met in college. After we were engaged his grandmother traced his family tree back just a few generations to the same place in a completely different state where my relatives were from. Her research revealed that we have common names in our family trees not that many branches removed, and thus could be related. I could not care less, but then I have the privilege of knowing this information and can decide that I don’t care.

  55. Justin says:

    marilynn (32),
    I only have experience with egg donation agencies, so I am unsure whether my impressions apply to sperm donations as well.
    All of the egg donation agencies I consulted with were more then willing to do any test I asked for, providing the donor agrees and the potential parents pay for that test. Therefore, I would not expect them to object or block any request by potential parents to pay for genetic screening for distant familial relations.
    The question then turns to two other factors: (1) How high is the medical risk, which may depend upon the potential parent’s own family medical history; (2) How much does such a genetic test cost. The potential parents will then need to look at the magnitude of various risks, the costs of screening for them, and figure out which risks would they choose to screen for.
    In a perfect world, I would love all potential parents to do this screening free of charge. In our less-then-perfect one, educating potential parents about various risks and having them make informed decisions about screenings is the best we can hope for.

  56. Greg says:

    “France does have much stricter laws re the number of donations a donor can make compared with the US (5 per donor for France, no enforced national limit for US).”

    And that is where I believe the focus should be to educate and regulate rather than ban things. If you ban things it will just create more problems because the desire to create families will always be there. If France isn’t having the issues we are discussing and they have stricter regulations then that’s the model to follow, IMO.

  57. marilynn says:

    Justin
    The one thing I can really respect is someone that digs in and does research. I am excited to read the item you found and linked to.

    I myself did a lot of research on the studies that are the basis of the current ASRM limits as well as their previous limits which are the current limit of 10 elsewhere in the world.

    Justin we clearly differ on what we find to be ethical behavior for bio parents after the birth of their offspring. But I like to learn new things and I’m not married to any line of thought. In fact it’s cool if I learn something that makes me change my mind. I don’t want to be a sheep. For the purpose of this post I can set aside my preference for people to not shop for strangers to have kids with and I can focus on the things a person should screen for if they had the chance and gamete donation does clearly put people in a unique position to be more informed than than they would be with their eyes wide open shopping for mates in a bar or on line because they can ask to have a test similar to the FTDNA test that would screen people who are at that 3rd cousin level when they might miss the relatedness just dating.

    Reality is vending donor gametes is a business and the companies will do as little as they can to reduce the chances of making a sale. They’ve screened them for all the top diseases and I’m sure their thinking is that if someone two people are willing to make babies together not knowing if they’re related – that’s their fault their risk and if something goes wrong and the kid has a defect they can say well what did you expect?

    So I am able to play devil’s advocate and put myself in the shoes of someone looking to have a baby with an anonymous person just long enough to see where there is opportunity for people to make a fast buck at the expense of me and the kid I’d hope to someday have.

    So Justin, I’m capable of stepping outside my box to look at issues through different lenses. My goal is always that others will be too. Even if it’s just a side line issue on genetic screening like this. I’m always looking for what’s fair. In this case I don’t feel that people paying to have the gamete donors genetically screened are being treated fully fairly because I think that doing so will reduce their profits. Oddly in this case I’d side to protect those I generally vehemently disagree with.

  58. cb says:

    ““Even while excluding intentional incest, the probability a person will be conceived by a close relative is four times higher in children conceived by sexual intercourse than in children conceived by anonymous gamete donors.”

    Not what you would think would be the case but I think it proves that the anonymity is less of a concern from a standpoint of inbreeding. Thank you for sharing Justin. Now that we have proven research it’s something we can choose to accept it or deny it because it doesn’t support our position.”

    France does have much stricter laws re the number of donations a donor can make compared with the US (5 per donor for France, no enforced national limit for US).

  59. Greg says:

    “Even while excluding intentional incest, the probability a person will be conceived by a close relative is four times higher in children conceived by sexual intercourse than in children conceived by anonymous gamete donors.”

    Not what you would think would be the case but I think it proves that the anonymity is less of a concern from a standpoint of inbreeding. Thank you for sharing Justin. Now that we have proven research it’s something we can choose to accept it or deny it because it doesn’t support our position.

  60. Justin says:

    marilynn (26)
    Your concern may have been logical, but turned out to be unfounded. See my comment (23) for the details.

  61. marilynn says:

    I’m addressing the topic which is what a person would want to know about the person they are making a baby with if they are already testing their dna. If a person has college age relatives or relatives in the medical profession it would be wise to screen for relatedness. If your relatives are poor short and uneducated there is less of a chance than if you come from tall good looking ivy league stock.

  62. marilynn says:

    Justin – you got me there have not been academic studies saying they are more inbred than the rest of the population. But I did not say they were more inbred I said they are more likely to be inbred because their parents ARE NOT attempting to eliminate their relatives from the pool of people they’re mating with. They are not even trying to avoid having children with their relatives the way they would if their eyes are open so of course their is a greater liklihood that they’d be inbred than if their parents were trying to avoid it.

    There is nothing illogical about that statement. If you blindfold the driver they are more likely to crash into people than if you did not blindfold them. If you blindfold the pedestrians they are more likely to get hit than if they could see the car coming for them. If you blindfold them both and put them on the same road at the same time and tell them to GO FORWARD what do you think is likely to happen that would not otherwise happen if they could see?

  63. marilynn says:

    CB agreed that it’s not unusual for 2nd or 3rd cousins to marry and have no idea even. However mating with someone at that level does increase the risk of defects and so if you’re already testing the dna of anonymous mates why not test for the one thing that could significantly decrease the likelihood of defects. Also remember that donors and recipients are mating in a double blind experiment that prevents people from recognizing very close relatives from their immediate family like first cousins, siblings, half siblings, aunts, uncles, nieces and nephews. Granted people have more second cousins than they do first cousins so a greater chance at that level but any unknown relatives increases the chances of inbreeding from zero to something far more uncomfortable.

  64. marilynn says:

    B, it’s great that you and your relatives know one another now. I’m curious why during your dating days you’d have heightened concern about dating other adopted people or why you think that donor offspring would have heightened concern about dating other donor offspring. You could easily be dating a cousin, sibling, aunt, uncle, niece, nephew, grandparent or even parent and them have no idea they were related to you and vise versa. One of my dear friends was a paid companion in the city where she grew up and I was terrified that she’d end up sleeping with her uncle, father or grandfather because of her line of work and the propensity for older men. I worked super hard to find her family because of that fear. Not a great line of work anyway but for an adopted person its far more frightening. She was concerned about potentially dating siblings and when I reminded her that she’s never gone out with a man that was less than 20 years her senior the blood drained from her face.

    Marna had said that telling a donor offspring person about it gives them the ability to test against a girlfriend before getting married but by the time your serious enough to take a dna test there may well have been a significant amount of contact that both would have preferred to avoid and they may be to emotionally entangled to extract themselves from the relationship – they never should have been prevented from knowing one another so they could avoid incest if they wanted.

    Question about the second cousin five generations back. A second cousin would be your grandparent’s grandchild. So they’d be the same generation as you, related to you two generations backward. If they were a second cousin once removed, they’d be your parent’s second cousin, related three generations backward – or your second cousin’s child which is still three generations but 2 back and one down. If they were a second cousin twice removed they’d be the same generation as you connected two generations backward.
    All of those is closer than recommended but you may not have noticed the connection if you were not adopted either until your parents got talking about your families and by then you might be too close to scrap the relationship. That’s why people screeing anonymous mates have this opportunity to avoid unintentional incest is bizarre they would not test for relatedness because it would greatly reduce likelihood of defects.

  65. Justin says:

    I believe a brand new study (published this March) can shed some light on the risk of consanguinity due to anonymous gamete donations. Although I read the abstract of this study before, I waited posting this comment until I could get a full text copy of the article and verify for myself that its methodology was sound.

    In France, the law dictates that all sperm donations are anonymous. Recently this law has been questioned, and some objectors claimed risk of consanguinity in donor-conceptions or by donor-conceived children.
    Dr. Jean-Louis Serre from the Université de Versailles, along with five other researchers, calculated the risk of consanguinity in France using population models by Wang. The article is quite mathematically-heavy, but the results are easy to understand.
    1. Even while excluding intentional incest, the probability a person will be conceived by a close relative is four times higher in children conceived by sexual intercourse than in children conceived by anonymous gamete donors.
    2. Even among those consanguities that exist in donor-conceived children, the great majority of them will be of distant relations.
    3. The risk of consanguinity is even smaller for donor-conceived children who are aware that they are descendants of an anonymous donations, as they are more likely then the general population to seek genetic counseling for themselves and their intended partners prior to reproduction.
    Or, to summarize in plain English, the best research up to date has shown that anonymous donor conception does not raise the risk for inbreeding and incest (and probably even lowers it).

    For those who wish to read the study itself, the exact reference is:
    Serre, J., Leutenegger, A., Bernheim, A., Fellous, M., Rouen, A., & Siffroi, J. (2014). Does anonymous sperm donation increase the risk for unions between relatives and the incidence of autosomal recessive diseases due to consanguinity? Human Reproduction, 29(3), 394-399.

  66. cb says:

    “I do think with how mobile society is that if I was DC, and knowing how many others are too, I’d want a relatedness test before getting serious with anyone (biggest fear growing up as an adoptee and I’d think it would be magnified for DC).”

    Back to this sentence, even though I wasn’t overly worried, I always considered it a possibility and certainly the possibility of multiple unkown bilogical siblings would be magnified in DC. It is of course good that one can find one’s sibling via a register but since fairly high percentage of DC conceived people may not know that they are DC conceived then they aren’t going to register. Many countries do regulate the number of sperm donations by a donor – here are laws in each country:

    http://en.wikipedia.org/wiki/Sperm_donation_laws_by_country

    Here is an article about donors with multiple donor offspring.

    http://www.nytimes.com/2011/09/06/health/06donor.html?pagewanted=all&_r=0

  67. anonymous says:

    This show was interesting and informative.

    I took away a different reaction from many of the other commenters. My take away was that the genetics community increasingly advocates for general screening of the population.

    Everyone has 5-7 mutations. Knowing your family gives a false sense of safety. Knowing the past 5 or 6 generations of your family history does not mean you are aware of even one of these recessives.

    Or you can do what the general population does. Gamble on the odds that your kids won’t get the disease. Family history rarely reveals those 5-7 diseases. Odds will be the same for donor pregnancies as for the general population.

    Multi-variable disease is less likely to be revealed by family history. Recessives take two variables. Multi-variable take more.

    Family history is not helpful in calculating risk because of the mixture in the population.

    Their discussion of the US population was helpful. European genomes are mixed with African genomes to the extent that the old calculations of collecting family history aren’t as helpful as we thought. Testing for sickle cell isn’t enough if you know your African American. The European background means you are at risk for all of those additional diseases.

    Understanding the odds and simple math can help you calculate your risk. Worries about marrying a cousin in the US are much less then Iceland. There’s less then half a million people living in that country. More then 300 Million live in the United States.

    Understanding math is helpful in these calculations.

  68. cb says:

    “Dawn, re the relatedness points, I wrote about this article (link below) when it came out – not about creating the child, but for the DC. I do think with how mobile society is that if I was DC, and knowing how many others are too, I’d want a relatedness test before getting serious with anyone (biggest fear growing up as an adoptee and I’d think it would be magnified for DC).

    http://www.smithsonianmag.com/smart-news/some-icelanders-are-accidentally-dating-a-relative-and-now-theres-an-app-for-that-25175819/

    I think Anonymous makes a really good point that relatedness testing should be the considered in the beginning, not sure how many markers would be needed to screen out 1st and 2nd degree relatives, but certainly a great topic to explore – some might not care, but undoubtedly others will care and would be better to know before than to learn about it after.”

    I agree with TAO that some sort of relatedness testing should be done. It does sound as if it is possible up to third cousins:

    http://genetics.thetech.org/ask/ask284

    “Some states still list 3rd cousins as no-no’s, after 3rd cousin the risk of defects is supposed to drop off.”

    Marriage between second cousins is legal in all states:

    http://marriage.about.com/cs/marriagelicenses/a/cousin.htm

    Btw, I am “inbred” 🙂 My biological grandparents are third cousins on both their fathers’ sides and their mothers’ sides. Grandmother’s paternal great grandfather was brother to grandfather’s paternal great great grandfather. As for their mothers’ sides, can’t quite remember the relationship but think it was also sibling great grandparents. My grandparents lived in a tiny town in the southern part of the state of which their ancestors were some of the founding fathers. Of course, the above was no doubt very common in small towns throughout the centuries and is not unusual.

    Anyway, the above is not particularly relevant but just howing that third cousins married is not particularly unusual especially in small towns.

  69. marilynn says:

    You know that I work with the FTDNA cousin lists of a whole lot of donor offspring and adopted people and I have all their results in a central database. Cousin lists are anywhere from 60 to 500 people long from all over the world. Quite a few of the donor offspring and adopted people are distant cousins. They all at least share cousins. I share cousins with almost all of them myself. In fact I share a 3rd cousin with Alana and that information helped me exclude my half of that cousin’s family to identify her line for certain. Unfortunately I have to build out family lines for several generations of that cousin’s family and that takes time.

    I would not recognize that cousin on the street or most of them but if I was making a baby with a person I did not know I can tell you it would not be with one of the people on my cousin list. Most people would feel the same way. Geographic proximity to the recipient is obviously a factor the closer they are physically to where the recipient’s family is from, the more likely they are to be related. But don’t forget second cousins are your grandparent’s siblings grandkids, so where did your grandparents grow up? 3rd cousins, where did your great grandparents grow up? Some states still list 3rd cousins as no-no’s, after 3rd cousin the risk of defects is supposed to drop off. Recipients would be looking at people in the once removed or one generation below range. 1st cousin 1r, etc (close relatedness would be cousin’s kid or niece/nephew, grand niece/nephew, grandchild, child, half cousins, nieces and nephews etc.)

  70. marilynn says:

    Shoot I’m sorry different computer. I’m Marilynn it just registered anonymous. On the dsr look up my name its one of the articles there. I’d rather link to their library which I did because there is a wealth of interesting and pertinent info there that might be more interesting than what I wrote. Although what I wrote is pretty staggering since I link to all the original studies that are the basis for the numbers we are use to hearing. I just did a ton of research to pull other people’s research together into one place. I also do the ASRM formula for the max number of kids per donor and its over 200,000 (no limit, no limit to profit)

  71. Justin says:

    marylinn (4+5+9+11)
    Your answer was not related to my comment, nor did any of the articles you linked answered it, so I will ask again, and try to do so as clearly and unequivocally as possible:
    You stated: ” Donor offspring are more likely to be inbred within the third degree than other people” and “I’m even finding that many donor offspring seem to have relatives that split the difference between their mom and dad a couple generations back so like in the third cousin range.”
    in other words, you claimed that donor offsprings are more likely to be the results of inbreeding or incest. Can you show one academic study that found this (and just to clarify, found the following: greatest frequency of children of incents among donor conceived children)? If not, than that claim of yours should be regarded as slander against the donor-conceived community.
    As for the definition of Fertilism, Dawn has asked us not to continue the discussion on that subject in this blog post. Therefore, I’ll refer you to the answer of Anonymous (130) on the “Donor Conceived Adults Speak Out” blogpost.

  72. TAO says:

    Dawn, re the relatedness points, I wrote about this article (link below) when it came out – not about creating the child, but for the DC. I do think with how mobile society is that if I was DC, and knowing how many others are too, I’d want a relatedness test before getting serious with anyone (biggest fear growing up as an adoptee and I’d think it would be magnified for DC).

    http://www.smithsonianmag.com/smart-news/some-icelanders-are-accidentally-dating-a-relative-and-now-theres-an-app-for-that-25175819/

    I think Anonymous makes a really good point that relatedness testing should be the considered in the beginning, not sure how many markers would be needed to screen out 1st and 2nd degree relatives, but certainly a great topic to explore – some might not care, but undoubtedly others will care and would be better to know before than to learn about it after.

  73. B says:

    Opps, I forgot to mention healthy.
    At 20+/- years old, both of my parents, and their parents, were deemed extremely healthy.
    I was quite invincible until I got the current FHH list…
    40 years later, whew, I have a long terrifying list of hereditary medical issues to look out for.
    Glad I know now. So is my doctor, she looked so excited while scheduling tests for me that my insurance will actually pay for since I now have a Family Health History, yay!

    One hint to those with no full FHH, check everything on the list as if a family member had it. Then your insurance will most likely cover any testing needed. No FHH, no current symptoms? No reason to test.

  74. B says:

    The first thing I did when I found my original parents identity was extensive genealogy research to ease my worry of 20 years – that I had married a cousin, a brother, uncle, etc.. Whew, got lucky, sort of. I did marry my second cousin 5 generations removed. So we are cousins to our kids too. We did dna family studies to be certain, and now we are.

    I’ll always wonder if GSA http://en.wikipedia.org/wiki/Genetic_sexual_attraction
    was a factor?

    I can only imagine some DC people would have this worry a bit more than me, knowing they could have dozens of sibs out there, possibly in the same age range.

    I remember the family-history-question-duty I found when I began to date! Which meant I had to reveal my adopted status as well (or at the least that I didn’t know who my original families were, didn’t always have to say why) – that can at times be a bit embarrassing. It’s not easy asking questions when you don’t know anything identifying. I only knew ages and what state they lived in at the time of my conception/birth and that my handsome father was in the Air Force and my pretty and smary mother enjoyed reading and dancing.

    I guess if I were DC I would start with this question for my date, were you DC? But just like some adoptees don’t know they are adopted, some DC don’t know either. I was always leery of dating other adoptees, or pretty and smart people who liked to dance or read or had been in the Air Force, might be a sibling, or my father!

    Certainly it can be done, lived with, survived LOL, but that anxiety-that-can’t-be-ignored-while-dating is not much fun at all. It could easily go all wrong in a really bad way, or not.

  75. Beatrice B.L. says:

    Thank you for this show. It came at a great time for us as we try to decide on what to do. One of my hang ups with using donor was becuase of concerns about their genes and what I would be passing on to my child. And how much would I get to know and what should I ask for about the donor. I thought I knew more about genetics than I did. (he-he) Please tell you really great guest a huge thanks from the patients who really NEED this stuff.

  76. Anonymous says:

    I’m not sure what a fertilist is. I was commenting upon the topic of this article which is just how much should a person find out about the individual they are reproducing with.

    Eliminating the possibility of reproduction with an immediate relative is the first order of business if you want to have a healthy child then you can work on choosing a person that has a low risk of other inherited conditions.

    Justin can you tell me if you think that testing against a donor is a bad idea and if so why?
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3419292/

  77. Anonymous says:

    If you have one unknown relative, you can’t screen out that one unknown relative to avoid unintentional incestuous contact.

    If all your relatives are unknown to you, you can’t screen any of them out to avoid unintentional incestuous contact. You have a greater chance of unintentional contact than the person who has only one unknown relative. Both you and that person have a greater chance of unintentional incestuous contact than a person who knows and is known to all their relatives.

    A person can blind themselves to the identity of the person they are conceiving a child with, or they can be blinded because of restrictions set by others who wish to conceal the truth for whatever reason.

    If a person is blinding themselves to the identity of the person they are having children with and they are already putting that person through a battery of genetic tests, wouldn’t it be prudent to test them against yourself to screen out people related to you closer than 3rd cousin.

    http://www.ncbi.nlm.nih.gov/pubmed/7843456?dopt=Abstract
    http://www.ncbi.nlm.nih.gov/pubmed/9176470

    I wrote an article about the real ASRM limit that’s on the DSR research library page, just word search my name. There are links to various research studies that became the basis of the limits imposed in Europe and those suggested by the ASRM here in the states.

    https://www.donorsiblingregistry.com/resource-library/industry-issues

    Justin correlation between unintentional incest and the inability to identify one’s relatives is really not in question. What’s argued most often is what are the chances that the child born of the incestuous contact would have genetic defects. I think that is a far more difficult thing to establish than simply that knowing who your related to is a great preventative measure.

    I don’t like to get into the question of chances of being born with a defect. I do think its almost impossible to demonstrate and I’d actually never want to suggest that someone whose parents are related should never have been born. What I’m saying is in keeping with the topic of this post how much does a person need to know if they are going to put gamete donors through these batteries of tests? It seems obvious that the very first thing most people would want to screen out in terms of donors would be someone who they are related to closer than third cousin AND THEN move on to all the other various tests for genetic conditions. Right? I really think that these cryo banks don’t offer testing against recipients because it would cause them to loose some sales. What if a person did not have any back up choices at their cryobank and moved on to a different company?

    Do you find what I’m saying so unreasonable or is it that you just don’t like me and anything I have to say must be worthless and hateful and malicious? If you were a guy shopping for a woman to have a child with and amongst the genetic tests given to her was one to make sure she was not related to you and you found out that she was a close relative, say a first cousin or a half first cousin….would you go ahead or cut your losses and choose someone else?

    • Anonymous, the show was on testing for recessive genes for diseases. I wish I had received your question before the show because I didn’t think to ask about testing to rule out uncomfortably close relations. I’ll admit to my own ignorance–I don’t know if this is done. I assume it is fairly easy since paternity tests seem to happen every day on the Maury Povich show.

      I think realistically, many people are using sperm donors from cyrobanks that are not located near by and can request a donor that does not live near them to reduce these possibilities. Egg donors can come from clinics, agencies, or banks, and at least those from clinics would be located nearby. I would assume the chances are pretty low if you choose donors from geographic places not located near your family.

      You will need to attach links to your articles here because you are commenting as “Anonymous”.

  78. Anonymous says:

    Also people often don’t know about their own health problems until they have (and raise) their own children. If I was donating eggs I never would have known I have thrombofilia and never would have known that all my pregnancies were probably ending in miscarriage or still birth and never would have gotten treated. Like TAO said they are young when they donate. People have to see the results of what they do to learn about their own health

  79. Justin says:

    Marilynn (3+4),
    When will you stop lying in the service of fertilist agenda?
    Here are the facts:
    1. No study has found greatest incidence of inbreeding or incest among donor-conceived children. I have no idea where you pulled this idea from.
    2. No study that compared donor-conceived and IVF-conceived children has found greater risk of birth or genetic defects, due to inbreeding or any other reason. I have no idea where you pulled this idea from.
    Unless you can produce a credible source, your words should be regarded as rather silly slander.

  80. TAO says:

    Hey Dawn,

    One of your guests (male) spoke about family health history in teasing out the recessive and/or multi-factorial diseases. Will you do a follow-up show (Part 2) with him on how that plays into reality of living without a good FHH and the impact on the individual (and their parents), and then for their children? Specifically, what minimal requirements should be in place, what is the ideal, what should people be looking for in the company they choose (we all know change is driven by the consumers). Should anonymity be done away with, should the donors be educated to update FHH and for what and when? Should the ASRM (?) have better minimum standards in place than they currently do? Do intended parents get educated by the companies they use, or is it left up to chance that they happened to stumble on shows like yours? With so many people being created this way and the gene combinations not yet found, and realistically not for a long time because that takes time and money…

    Are people thinking their child is protected because of the “screening” and/or testing of the donors which in reality is just for a handful of diseases? I say that because the “health” of the donor comes up a lot, several times in the last post you did. But we all know with young people (at the age they are donors) probably never had the desire to know what, or at what age, one of their first or second degree relatives got sick with, and/or died from.

    A false sense of security is problematic. Sorry – you know this is my soapbox subject…

  81. marilynn says:

    You need to know if they are your 3rd cousins or closer since the technology is available and your already testing their dna – test it against yours. STD’s and genetic defects are not the greatest risk in having children with anonymous people, incest is. People worry about the kids hooking up – and ignore that the kid’s parents were reproducing with strangers they could be related to just as easily.

  82. marilynn says:

    Dawn this is an EXCELLENT POINT. Why would a person have to know more about the genetic flaws of a donor than they would their husband or boyfriend girlfriend or wife? Donors are just people no different than any other man or woman a person would have a child with. It’s absurd to go any further than STD testing really. Normal people might use condoms for a while until they are reasonably sure their partner is std free and then certainly not if they decide to have a child together; a donor is one of two consenting adults to a sexual act that will – both of them hope, create their joint offspring (that sadly only one of them or possibly neither of them will raise) But they both are hoping for the outcome to be the birth of their offspring otherwise neither would undertake the effort of trying to reproduce together.

    Here is the thing though Dawn, why with all the genetic testing don’t the test the donor against the people they mate with to make sure they are not related 3rd cousin are closer? I mean everyone worries so much that the kid’s will wind up getting together unwittingly with siblings but their parents are even more likely to have been related because the likelihood of incest is stupidly not on their radar when they are shopping for mates in their region in their ethnic group with similar religions, interests and upbrining and values. Donor offspring are more likely to be inbred within the third degree than other people because their biological parents never met. And by biological I mean acutally biological – not the temporary biological state of pregnancy that develops a fetus a time prior to childbirth when there were no parents biological or otherwise because there was no child.

    A donor could easily be someone’s cousin or niece or sibling or even their adult child or step child. Imagine the 40ish 2nd wife of a man with grown children going to the clinic to find a woman willing to have offspring with her husband and let her gestate their fetus and raise their child…..his college age daughter or niece is signed up as an egg donor and nobody knows about it. She does not have the same surname as her father or her uncle. Bam all of a sudden he’s making babies with his daughter and the daughter’s step mom is going to give birth to her own step grandchild and not know it.

    That is a super extreme example but in truth I’m even finding that many donor offspring seem to have relatives that split the difference between their mom and dad a couple generations back so like in the third cousin range. Most people would opt not to mate with their 3rd cousin or 2nd or 1st cousin if they knew about it and could easily just select someone else from the catalog. It’s not like there is an emotional relationship to contend with that might make them overlook the relatedness. They could avoid some fairly serious genetic defects by doing a test to see if they are related. Seeing who you have sex with generally clears away the most immediate of relatives and some of the secondary ones as well I’m sure. All that is lost when you have babies with strangers. Its just so stupid.

  83. Anna says:

    Some people do a karyotype blood test.

    But I’m not clear on what this test shows.

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