Saturday, May 13, 2017

Geneticist afraid of genetic knowledge

NPR radio rebroadcast this:
Today's guest, Siddhartha Mukherjee, has written a best-selling book called "Gene," which is now out in paperback. It tells the history of genetics and reports on new breakthroughs and ethical questions resulting from gene manipulation. ...

GROSS:... I want to ask about your own genes. Have you decided whether to or not to get genetically tested yourself? And I should mention here that there is a history of schizophrenia in your family. You had two uncles and a cousin with schizophrenia. You know, what scientists are learning about schizophrenia is that there is a genetic component to it, a genetic predisposition. So do you want to get tested for that or other illnesses?

MUKHERJEE: I've chosen not to be tested. And I will probably choose not to be tested for a long time, until I start getting information back from genetic testing that's very deterministic. Again, remember that idea of penetrance that we talked about. Some genetic variations are very strongly predictive of certain forms of illness or certain forms of anatomical traits and so forth.

I think that right now, for diseases like schizophrenia, we're nowhere close to that place. The most that we know is that there are multiple genes in familial schizophrenia, the kind that our family has. Essentially, we don't know how to map, as it were. There's no one-to-one correspondence between a genome and the chances of developing schizophrenia.

And until we can create that map - and whether we can create that map ever is a question - but until I - we can create that map, I will certainly not be tested because it - that idea - I mean, that's, again, the center of the book. That confines you. It becomes predictive. You become - it's a chilling word that I use in the book - you become a previvor (ph). A previvor is someone who's survived an illness that they haven't even had yet. You live in the shadow of an illness that you haven't had yet. It's a very Orwellian idea. And I think we should resist it as much as possible.

GROSS: Would you feel that way if you were a woman and there was a history of breast cancer in your family?

MUKHERJEE: Very tough question. If I was a woman and I had a history of breast cancer in my family and if the history was striking enough - and, you know, here's a - it's a place where a genetic counselor helps. If the history was striking enough, I would probably sequence at least the genes that have been implicated in breast cancer, no doubt about it.

GROSS: OK.

MUKHERJEE: I recommend this for my patients.

GROSS: OK. Thank you for that.
This opinion is weird.

Genes are the most important thing in the world but he does not want to know his own genes because of a mixture between thinking that genes are predictive and that genes are not predictive. Which is it? Are they too predictive, or not predictive enuf?

But if a feminist interviewer asks him to recommend gene testing for women, to show that he supports women, he complies.

If the genetic info is bad for him, why wouldn't it be bad for the woman?

Obviously he has some sort of phobia about learning about himself. If he cannot face his genetic data, then probably millions of others cannot either. I understand Jim Watson of DNA discovery fame was also afraid to learn his genes.

No comments: