Incest, "the children," and personal genomics

By Razib Khan | April 19, 2011 12:16 pm

Mischa Angrist and Brendan Maher point me to two interest personal genomics related stories. First, a follow up on inadvertent uncovering of incest story from last winter in GenomeWeb, Incidental Findings:

Recently, he and his colleagues encountered a case in which a married mother of three children with cognitive and developmental disabilities — the eldest of which she conceived in a previous union — opted to submit their genetic samples for screening. The researchers discovered a span of homozygosity that indicated the oldest child was the product of an incestuous conception between first-degree relatives. When they informed the mother of what they found, Beaudet says she vehemently denied such a relationship and demanded that the test be repeated. “The test was repeated and [the result] was the same,” he says. “And then she sort of broke down and said: ‘My husband will divorce me if he finds out about this.’ … There are just a lot of difficult things that come up.”

A few years ago professionals had discussions about whether they should even divulge this sort of information which might destabilize the family unit. In particular in relation to paternity. I think that’s a moot point, the horse has left the barn. Unless there’s a proactive effort by the powers that be to prevent consumers to from having any access to their own genetic information not facing up to these issues in the short run is probably just a matter of kicking the ball down the field. The only cases where I think it might be prudent would be when individuals have very short life expectancies, those with terminal conditions or the elderly. Otherwise you’re trying to run out a clock which will explode in your face.

Speaking of kicking the ball down the field, should children be tested for “adult” diseases? Some people think not, Parents ‘want child gene tests’:

Helen Wallace, from genetic science lobby group Genewatch UK, said: “Online gene tests frequently give misleading results because most common conditions such as cancer, obesity or diabetes are not predicable from a person’s genes, except in special circumstances.

“Children should not be tested for risk of adult-onset conditions, full stop. They should be allowed to decide for themselves, with medical advice, when they are grown up.”

Dr Vivienne Nathanson, director of BMA Professional Activities, said: “We would have concerns about genetic testing being widely available over the internet or off the shelf because parents could find out results without a health professional to help intepret them. They may also find out about genetic abnormalities for which there are no cures, or be caused needless worry.

From what I can tell GeneWatch UK is straight out of central casting for Left-science-neo-Luddite. In some areas vigilance is probably warranted, I’m not too sanguine about government intentions or execution either, but a lot of their material looks alarmist to the point of farcical. In any case, disease knows no hard and fast distinction between children and adults at age 18. I am going to get my children tested as soon as possible personally.

More information is not always better than less. But in most cases I think it is, and in the domain of personal health it almost always is.

CATEGORIZED UNDER: Genetics, Personal Genomics
  • Miley Cyrax

    Yeah, wouldn’t want to destabilize any family units by telling the father the truth: your wife’s a [redacted] and you’ve been throwing resources and energy toward offspring that aren’t yours.

    And on the second sub-topic: “In any case, disease knows no hard and fast distinction between children and adults at age 18. I am going to get my children tested as soon as possible personally.” A straightforward and excellent point.

  • Ken Pidcock

    Please think before being simply dismissive. I’m personally familiar with the community of families affected by Huntington Disease. As soon as someone is diagnosed, the affected person and their partner start worrying about the children, and many desire to have their children tested. The testing networks that serve these families will not allow this, and I agree with them wholeheartedly. I can’t imagine how parents would deal with that knowledge, but I worry whether it would be to the benefit of the child’s psychological health. (By the way, if your reaction to my third sentence was, “Why are those people having children, anyway?”, you need to learn more about the social epidemiology of the disease. Many adults at risk don’t know it, and others hide the fact from their partners.)

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    . The testing networks that serve these families will not allow this, and I agree with them wholeheartedly.

    i disagree. let the families choose.

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    Many adults at risk don’t know it, and others hide the fact from their partners.)

    ah, all the more reasons to demand a full genomic sequence from potential marriage partners before you get a license! (i’m only half-joking)

  • http://occludedsun.wordpress.com Caledonian

    ah, all the more reasons to demand a full genomic sequence from potential marriage partners before you get a license! (i’m only half-joking)

    Many jurisdictions require that people be tested for various sexually-transmitted diseases before marriage licenses are issued.

    Why should we treat genetic diseases any differently? This would seem to be even more important than knowing whether your partner has some STD, at least if you want to have children. And with some diseases, given that the partner would end up taking care of a mate who had full-blown Alzheimer’s or Huntington’s, whether there are children involved or not.

  • http://scienceblogs.com/mikethemadbiologist Mike the Mad Biologist

    I’m not sure I entirely agree. You should have access to your information, but not necessarily someone else’s (it does get confusing if parents test their own children). Medical information is confidential, and in the tested mother case, there’s no immediate medical need for release, such as might be the case if she tested positive for HIV.

    If DTC testing wants to be seen as a legitimate medical diagnostic, and not a gee-whiz type of thing, then many of these issues have been addressed, often as a result of brutal experience.

  • John Roth

    Mike:

    Data is data. The only question about whether a particular DTC genetic test is sufficient for medical purposes is whether it has sufficient coverage of the relevant regions. The original purpose for acquiring the test is completely irrelevant.

  • Mary

    The researchers “discovered a span of homozygosity that indicated the oldest child was the product of an incestuous conception between first-degree relatives. ” Did you all totally miss this statement? The statement by Miley Cyrex, I quote,”Yeah, wouldn’t want to destabilize any family units by telling the father the truth: your wife’s a [redacted] and you’ve been throwing resources and energy toward offspring that aren’t yours.” What about the fact that this woman was a victim of incest? Perhaps her own father or brother? All you think about is how her husband is throwing money away and you call her [redacted] names? My, aren’t you a sweetheart! (drips with sarcasm)

  • http://blogs.discovermagazine.com/gnxp Razib Khan

    #8, i think he wasn’t responding to that, but the fact that about 10 years ago there was serious talk amongst genetic counselors about proactively omitting inadvertently uncovered instances of paternity issues within families.

  • Roger Bigod

    This is an ancient problem. Blood groups (antigen alleles on red blood cells) were worked out by British blood bankers in the 1940’s and 50’s. They’d collect multiple families with variable alleles and show that the pattern of inheritance was Mendelian. To check the integrity of the pedigrees, they’d type the cells for all known blood groups. When they found a nonpaternity event, they’d throw out the whole pedigree but wouldn’t inform the subjects.

    This seems reasonable. The subjects hadn’t signed on to be informed of nonpaternity events. If the investigators informed the families, there were questions regarding how to inform. Some people might benefit, other be harmed. The more you think about the possibilities, the wiser their policy appears.

  • Dwight E. Howell

    I you pay for the tests you should get the data.

    If somebody is doing a study then maybe they aren’t obligated to inform you.

  • http://washparkprophet.blogspot.com ohwilleke

    As a lawyer, I’ve had cases where I have learned of a child’s irregular paternity from a parent, in which it was not in my client’s interest to disclose in situations where no one has conducted lab tests. Since a fair amount of work that I do is for people who are dying (trust and estate and probate work, e.g.), the parent often takes that secret to the grave and the other parent (if living and if that other parent ever even knew of their paternity) and I often remain the only people who know the truth.

    Ethically, these cases are easy for me, because as a lawyer, I have a duty to keep secrets, and if I say nothing, generally no one asks, which is pretty much 100% of those cases.

    But, it can pull at your heart strings to be denying a child knowledge of who their real parents are, and conceivably, there is a non-zero possiblity that a child’s inaccurate knowledge of his or her own paternity could do that child harm, for example, due to a medical decision made on the basis of an inaccurate family history of disease.

    For a physician in a genetic testing for research purposes, it may be far less clear what the relative duties of the physician to a parent and child respective may be. Physicians have a duty of confidentiality toward their patients, but in a research situation, it may not be clear who the patient really is.

    In a case involving the diagnosis of a child’s illness case, like the one mentioned, the physicians would seem to have a stronger duty to the child than to the parent, who is not necessarily the patient.

    * * *

    My practice also makes me quite aware of legitimate reasons for children to be tested for “adult” diseases.

    Parents in middle class and more affluent families have to make decisions on issues like how big of a life insurance policy to buy on their lives, on whether they should make outright distributions of inheritances or instead hold inheritances in trust for their descendants, and have to make educated guesses about the likelihood that one child v. another will have descendants (for reasons related to how death taxes work in multigenerational situations). These decisions often have to be made before children grow up, to hedge against the possibility that the parents will die prematurely.

    Knowledge that a child is at an elevated risk of a serious adult condition is highly relevant to this kind of planning. The more likely it is that a child will have such a condition of any kind, the more sense it makes to have a larger life insurance policy. If a currently young child is at high risk for developing a condition like schitzophrenia or bipolar disorder that often manifests only in young adulthood, it may make sense to set up a plan the leaves a child an inheritance in trust, rather than outright. And so on.

  • 4runner

    “What about the fact that this woman was a victim of incest? Perhaps her own father or brother?”

    I didn’t see how her “victimhood” was a “fact.” There are cases of voluntary incest.

NEW ON DISCOVER
OPEN
CITIZEN SCIENCE
ADVERTISEMENT

Discover's Newsletter

Sign up to get the latest science news delivered weekly right to your inbox!

Gene Expression

This blog is about evolution, genetics, genomics and their interstices. Please beware that comments are aggressively moderated. Uncivil or churlish comments will likely get you banned immediately, so make any contribution count!

About Razib Khan

I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. In relation to nationality I'm a American Northwesterner, in politics I'm a reactionary, and as for religion I have none (I'm an atheist). If you want to know more, see the links at http://www.razib.com

ADVERTISEMENT

See More

ADVERTISEMENT

RSS Razib’s Pinboard

Edifying books

Collapse bottom bar
+

Login to your Account

X
E-mail address:
Password:
Remember me
Forgot your password?
No problem. Click here to have it e-mailed to you.

Not Registered Yet?

Register now for FREE. Registration only takes a few minutes to complete. Register now »