Biobanks and Dead People: DNA and the Taboo

In an informative, two-part post at the end of August, Blaine Bettinger of The Genetic Genealogist introduced DNA banking for the deceased and questioned the ethics of biobanking without informed consent. In the first post (August 28) Bettinger writes:

DNA storage is being offered by funeral directors and retailers around the world. But it raises a few important questions – how necessary or useful is a dead person’s DNA, and is the retrieval of DNA from someone who has not given consent ethical?

In part 2 (August 29), he notes:

The most important concern about DNA retrieval from the deceased is the question of consent. Unless the deceased was asked before death, retrieval is without consent. Currently, however, you can obtain and analyze anyone’s DNA without consent, so perhaps this isn’t as radical as it seems.

Bettinger's musings stress the importance of individual autonomy--a value that societies often try to protect by requesting "informed consent" or "advanced directives" from willing tissue donors. In the United States many legal drivers have considered the option to consent to organ donation in the event of a fatal accident. Consent, however, for DNA retrieval in such a circumstance, seems somehow out of place … but why? Why isn't DNA retrieval from a recently deceased person protected and facilitated in the same way as is retrieving an eye-ball for transplant or research? Perhaps the latter, organ "retrieval" without a donor's advanced directive, breaks a deep-seated cultural taboo against the mutilation of the human body. If so, why doesn't the thought an unauthorized retrieval of a deceased person's DNA, arouse a similar sense that the human body has been violated? Do we "own" our DNA any less than we own our eyeballs? Is it a matter of aesthetics--DNA retrieval doesn't botch the open casket? Or scarcity? DNA is more common than spit; perhaps we fail to feel as possessive of a bit of human material we are not likely to miss? Or, maybe we just do not include DNA in our concept of the body … How is DNA a part of us? Is it merely information about the body or is it a part of the body our advanced directives are meant to protect?

These are only some of the questions we should consider while entering an era in which the promise of genetic genealogy, genetic research and personalized medicine encourages the practice of DNA biobanking. These are not questions we should leave to funeral directors and the retailers of direct-to-consumer DNA tests. Therefore, The Genetic Genealogist, and many of the other fine blogs at The DNA Network, should be applauded for doing their part to encourage public discussions of these issues.