“Ethics of Emerging Diagnostic and Predictive Tools (more)”

* Hank Greely, J.D.
o Deane F. and Kate Edelman Johnson Professor of Law
Stanford Law School
o Professor (by courtesy) of Genetics
Stanford Medical School
o Director
Center for Law and the Biosciences
o Director
Stanford Interdisciplinary Group on Neuroscience and Society and its Program in Neuroethics
Stanford Law School
o Chair
Steering Committee of the Center for Biomedical Ethics
http://www.bioethics.gov/transcripts/ethics-of-genetics-and-neuroimaging-testing/022811/ethics-of-emerging-diagnostic-and-predictive-tools.html

Presenter:
“I think the fourth, though, the last, is maybe the most important. Might be something that the Commission can do something about, although it might be too big an issue for it. What do we do about people’s consent? If we’re really interested in getting all this sequence data and health data, electronic medical record data, useful, incredibly useful potential resource, do we have to ask everybody about each study we do? Do we have to ask them whether they want to be researched on at all? Do we say this is part of your duty as a good citizen, as a beneficiary of the healthcare system to participate in this controlled work? What we are doing now I think is in some ways the worst of all worlds. We are using data broadly.

When people don’t understand that it is being used broadly, they give it for what they think is a narrow purpose with a little bit of language tucked in at page 17 of the consent form saying, “And may be shared for other research or other medical purposes.” So people who participate in a Parkinson’s disease and genetic study in Rhode Island find out, or they haven’t found out yet, that their genotypes and phenotypes are in dbGaP, an NIH database which is accessible to researchers all over the world for research on anything they want to be researched on. That question of control is a tricky one. What should we require and should the culture change in terms of what we require?

I think that is a potential land mind right now because I think there are a lot of people whose DNA and materials and data are being used for research who don’t know what it’s being used for and will be annoyed and unhappy when they find out. Three quick issues. There’s a lot more I could talk about but with four seconds left I’ll end.”


DR. FARAHANY:

I wanted to focus on your third category there, the identification category. I wanted to look at it from the perspective of both neuroimaging and genetic information. We have the Human Genome Project. There is also the Human Brainome Project and attempts to try to do as much neuroimaging as possible to try to see the commonalities across different individuals and also differences and do a lot of the same types of population statistics that we have done on the genome side with the brainome side.

Obviously there’s different information that the two fields can yield but I wonder if you could speak to some of the ethical issues that you raised to see if you think there are meaningful differences for data collection from neuroimaging than genetic collection.

DR. GREELY:

I think there are differences. I’m not sure I think they are meaningful. I think everything I said with respect to — almost everything I said with respect to the questions of genetic data could be applied to neuroscientifically acquired data also applies to old fashioned health data, that these questions of incidental findings of consent, of privacy, and of re-identification, lack of anonymity apply. This could be a good cross-cutting topic for the Commission.

I also think getting back to the issue of forensic, forensic writ broad as encompassing not just courtroom use, and not even necessarily criminal or legal system use but nonmedical uses, both genetic technologies and neuroscience technologies, I think there are similarities between some of the marketing issues whether it’s done based on someone’s genome or based on somebody’s MRI scan.”

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