Genetics and ethics

The first speaker, Uta Francke, is a geneticist at Stanford and is also a consultant for the direct-to-consumer personal genomics company 23andMe. Dr. Francke is interested in the genome as personal property: what does it mean to post the contents of your genome in the public domain? And what does it mean for your family?

Dr. Francke mentioned our ability to examine the genome for clues about ancestry and described the concept of race as no longer particularly useful in this area of research. She showed a striking map that showed how genetic variation mirrors geography in Europe. In addition to ancestry, Dr. Francke noted that researchers are beginning to find genes associated with differential drug response and predisposition to disease.

Personally, I think it's a little too easy to over-estimate the predictive power of SNPs right now (and certainly in the best interest of personal genomics companies to anticipate this power with much excitement), but I really enjoyed the next point that Dr. Francke raised: is your genome really yours? What about your family?

For complex diseases, we are so far away from being able to make accurate predictions about whether or not an individual will develop a condition that some of the ethical questions are premature at best, but it's still fascinating to think about these questions for Mendelian diseases. Huntington's disease, in which one gene really does definitively show whether or not a person will develop the disease, may be the most striking example: if one sibling wants to have her genome sequenced and share it with the world, should she get her family's consent? Do parents have the right to know if a child has the gene for Huntington's? What about the rights of the unborn?

It's a great thought experiment...for Huntington's disease. But it does seem like examples of genes with a clear link to disease are few and far between. This also made me wonder if companies like 23andMe even test for Huntington's disease. It's always disturbed me that the companies can't test for BRCA1 and BRCA2 (oncogenes implicated in breast cancer) - I wonder what else is off limits.

In 2008, the Genetic Information Non-Discrimination Act was passed, but Dr. Francke pointed out that this law only protects people from discrimination for health insurance and employment, not life insurance, disability, and long-term care.

During the q&a, there was an interesting discussion about the drug Warfarin (which came up in an earlier post I made here). The audience member pointed out that getting the dosing right is most important for the first dose of the drug a patient receives. The only way for the patient's genetic information to be helpful is to have it ahead of time rather than waiting a few days for the results of genetic testing. Dr. Francke agreed completely with this audience member's comment.

The second speaker, Amy Hall of Duke Divinity School followed up with a talk on Race, Protestantism, and Reproduction in the US. She embraces the ability of genomics to celebrate human progress and identity (how similar our genomes are, "what makes us us", etc.) but brought up several disturbing examples of the way that genetics and genomics can still be twisted today to support social Darwinian or ethnocentric thinking. One of the slides she showed was of images from Spencer Wells's "Journey of Man," in which the Bushmen of South Africa are labeled the "direct descendants" of our ancestors (as an audience member noted, "Aren't we all 'direct descendants' of our ancestors?"). The images showed the Bushmen as stand ins for ancestors, which might have made for great footage, but from an ethical perspective, it's an unsettling, deceptive tactic. Dr. Hall also read from a David Brooks New York Times story from January 15, 2010 in the wake of the Haiti earthquake. Brooks called for shoring up paternalism in a piece that clearly disturbed Dr. Hall.

Dr. Hall was less interested in trying to enforce some sort of political correctness, and far more interested in trying to get scientists (and members of the media) to think a bit more deeply about the way that we consciously or unconsciously present findings on race. The right answer is not to simply ignore race, even if, as others have noted, the concept of "race" has no biological basis and is becoming irrelevant in genomics. "Neo-liberalism and color-blind racism catapults us out of the conversation," Dr. Hall said.

An audience member asked why it was so easy for those outside of science to misrepresent scientific thought to prop up their agendas, but it's so difficult to reverse this. I think this probably has to do with how easy it is to form a misconception and how impossible it is to unlearn it. In the exhibit halls, I was talking to a AAAS staff member involved in Project 2061 about educating children - she mentioned a study I've seen before (but can't find right now!) about trying to correct children's misconceptions about science. It's not enough to tell them how photosynthesis works or how the Earth revolves around the sun - if they've learned it incorrectly somewhere along the road, it's incredibly challenging to get them to adopt a new mode of thinking.

Unfortunately, I think the same holds true for Dr. Hall's points on race. The concept of race, as unscientific as it may be, is so firmly entrenched in our view of the world that if we simply state that race is irrelevant to genomics and has no biological basis, we stop the conversation. Dr. Hall's suggestion to emphasize the commonality of the human genome and to be aware of the pitfalls that Wells and Brooks represent seems like a great way to stay engaged in the ethical conversation.