By Dan Kennedy • The press, politics, technology, culture and other passions

More on the difference gene

Last week I wrote about a new, cheap test that will tell prospective parents whether their children are at risk of having one of 100 or so different genetic conditions, including two forms of dwarfism.

Today I expand on that theme in the Guardian, arguing that such screening is tied to our conflicted feelings about difference.

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  1. Brian

    Excellent column as always, Dan. I know this wasn’t really the focus of this particular essay, but if you ever expand on this topic you might want to look at the writing Margaret Sanger. She was the founder of Planned Parenthood, and a big part of her promotion of birth control, etc, was to eliminate “undesirables.” This isn’t a new concern; its just the technology that is.

    • Dan Kennedy

      @Brian: Thank you. I have to confess that Sanger isn’t in my book, either, though I do have a long discussion of eugenics and people of her ilk.

  2. Ggood

    Interesting column. This is an issue I follow professionally. As I’m sure you know, the place where this issue has received the most debate, and the thinking is probably the most advanced, is in the IVF community where preimplantation genetic diagnosis has been standard practice for more than 15 years.

    The professional societies have all debated the ethics of exactly what you talk about and reached varying conclusions and developed varying guidelines. From following their discussions, I’m left with one odd observation. The scientists who develop and implement these new advances are awed by their mystery and respectful of their potential impact, while the general public is far less concerned. The survey you cite is interesting, but somewhat in conflict with my anecdotal observations. I’ve had many physicians tell me that the ethical issues involved in genetic testing are rarely (virtually never) an issue with their patients.

    Quite simply, a couple undergoing IVF that wants a boy instead of a girl will have no compunction in using the tests that can help them achieve that end. Similarly, they feel no concerns about selecting or ruling out other traits for their off-spring. It is up to the physicians to temper their demands, sometimes effectively and sometimes not since it is possible to obtain essentially any genetic test that’s available if one wants it. It is the outsiders who wonder about the consequences and values of such choices.

    I don’t know what to make of this, except that it’s one of those cases where it seems the public debate and discussion doesn’t match private decisions. Perhaps this is because those with concerns about such issues are less likely to pursue IVF. I’m not certain about that. I do wonder, though, if we are looking at an issue where we will see a fair amount of hypocrisy. If we knew we were going to have a child and we could choose to have one with a high IQ and a strong set of traditionally appealing physical attributes or we could simply let nature take its course, what would we do (especially if no one knew)? If we believe in the value to society of diversity, would we stand on that principle, or simply say: Let others provide diversity while I choose what I think will be the easiest and best path for my child.

    As I sit here and think hypothetically, I can come up with dozens of reasons why I might meddle my child’s makeup if it were in my power, even for relatively minor issues such as obesity. (At my age, it’s no longer a personal concern.) But I find the prospect of a world of “perfect” people to be, in your words, chilling. I’m just not sure how that would affect my personal choices.

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