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Should we be able to include deceased people's genetic and health data in research? (See this Nature news item from 2004: https://www.nature.com/articles/429118b)

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Consent to genomic and biomaterials research

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Consent to genomic and biomaterials research

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This paper discusses some of the challenges we identified with respect to consent:

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... to share your further thoughts on the issues we discussed, as well as to share interesting resources (cases, web links, papers) that you come across!

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Population genomic research and biobanks

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Population genomic research and biobanks

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We talked about research with populations and the idea of benefit-sharing. One of the projects we discussed was the Icelandic genome project run by the company DeCode. (Apparently they are still going strong -- some links in comments!) A question that we should consider is whether and how benefit-sharing arrangements can discharge ethical obligations with respect to population-based research?

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The other paper referred to in this post.

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What is the role of consent in health research using biomaterials and data?

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What is the role of consent in health research using biomaterials and data?

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A paper that may be of interest: https://academic.oup.com/medlaw/article/21/3/371/936340

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Use of human biomaterials (cells and tissues)

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Use of human biomaterials (cells and tissues)

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We discussed the case of John Moore, whose cells were used without explicit consent (he gave consent to the biopsies in what he believed to be a healthcare context, but the scientists did not disclose their research interests in the cells) to generate the commercially-valuable, patented Mo cell line. Moore tried to sue the researchers in respect of the failure to obtain properly informed consent, and for "conversion" (essentially "theft" of his cells). The remedy he sought was to receive a share of the income from the commercial use of the cell lines. For the claim in "conversion" to succeed, the court would have had to hold that his cells and tissues constituted property -- something that courts have generally been reluctant to do. In the end Moore was awarded damages for the researchers' breach of fiduciary duty in failing to inform him of the true purpose of the procedures he underwent.

The two papers below discuss some of the ethical aspects of the case -- the Potts paper has a nice synopsis of the case in Part II.A (I don't suggest you read the whole paper, unless you are particularly interested in the legal analysis; note also that the analysis of the doctrine of informed consent is primarily in relation to medical treatment rather than consent to research), while Annas considers the issues around commercial use of cells and whether informed consent is adequate to deal with these. Do you agree with his position in the penultimate paragraph, that individuals who donate tissue for research should receive financial compensation only in the case that their cells prove to be commercially valuable?

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SPIRE (http://spire.scot/), the Scottish Primary Care Information Resource, is an initiative to use patient data from GPs to improve health care and research. It has been implemented on an opt-out basis. What are your ethical opinions on this?