The Role of Consent in Genetic Research.

Today, I had to give a miniature presentation and lead a discussion about a topic in genetics. 

I chose to explore an article that I remember reading in the NYT earlier this year.  The piece concerns a lawsuit brought by the Havasupai tribe of the Grand Canyon against Arizona State University over issues of consent.  The university collected tribe members' DNA samples under the premise of trying to trace a devastatingly high incidence of diabetes among the Havasupai.  Researchers eventually ended up using the blood samples, a sacred symbol to the tribe, in other scientific endeavors including studies of mental illness, geographic origin of the Indians, and inbreeding.

The Havasupai found a lot of these results to be culturally offensive.  For instance, traditional Havasupai folklore holds that the group originated in the Grand Canyon, while a study suggested a migration from Asia.  No member of the tribe was ever informed of the other uses of the blood samples, and ASU is now paying a $700,000 settlement and returning the samples as compensation.

  

Havasupai Indians pray over the sacred, remaining blood samples of  deceased relatives.

We discussed whether it should be the responsibility of the researcher to inform potential DNA donors of all planned uses of DNA and to seek explicit permission before continuing.  Some believed that the medical benefits can justify similar situations, while others believed that the geneticists in this case were in the wrong.


All this reminded me of an older, but more famous case- that of Henrietta Lacks. I talked about how her uninformed contribution to science in the form of immortal cancerous cervical cells has propelled generations of medical breakthroughs, ranging from the polio vaccine to space research, chemotherapy, cloning, in vitro fertilization, and the entire field of virology.

 Henrietta Lacks.

In the case of the HeLa cell line, the benefits are quite clear.  But what of the ethics of taking advantage of a minority- an African American woman of the mid-twentieth century?  I noted parallels between her family's eventual confused understanding of what had happened without their knowledge and the general misunderstanding between the Havasupai tribe and ASU researchers.  A journalist, Rebecca Skloot, explains the family's reaction:

So a postdoc called Henrietta’s husband one day. But he had a third-grade education and didn’t even know what a cell was. The way he understood the phone call was: “We’ve got your wife. She’s alive in a laboratory. We’ve been doing research on her for the last 25 years. And now we have to test your kids to see if they have cancer.” Which wasn’t what the researcher said at all. The scientists didn’t know that the family didn’t understand. From that point on, though, the family got sucked into this world of research they didn’t understand, and the cells, in a sense, took over their lives.

So, when Mr. Lacks was finally informed of this overwhelming information, there was no proper delicacy in the development of communication between the scientist and the family. Should it not be the moral responsibility of the scientist (both parties, really) to ensure an adequate, accurate level of communication between science and those it affects, regardless of how difficult this may be at first attempt?

The HeLa Line of cells.

Some students brushed off the ethical implications of both the Henrietta Lacks and the Havasupai tribe case, but I think that it hints at a deeper need for better communicative bridges between science and the rest of us. I'd like to elaborate more on this topic, but schoolwork awaits.




Also, science writing, here I come.