How should we deal with the health data from deceased relatives?

A recent news article has been published in Nature entitled ‘Gene-expression study raises thorny ethical issues‘. This is to do with the recent massive release of data from the US$150-million Genotype-Tissue Expression (GTEx) project, an NIH funded initiative amassing gene sequences, activities and other data from across 44 types of tissues.

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This project uses tissues from recently deceased donors, whose relatives are asked to provide the medical history, dozens of tissue samples and the genome sequencing of the donor. Questions are raised about the fact that the family are confronted with stress  when researchers and bioethicists contact the family requesting the consent for access to tissues and data, primarily due to being affected by the recent loss.

My experience with sequencing this year the genome of my Aunt who passed away in May 2013 has been different. It was not a traumatic experience because we started doing these experiments four years after she passed. Perhaps the rush of needing to collect the tissues for a research project soon after their death might not be the answer when using donor data for experiments. I am not trying to compare my experiments with those of GTEx since they are both different:

  • My aunt consented to have her saliva genotyped via 23andMe. The actual consent for her genome to be sequenced came from her next to kin, my uncle (the couple did not have children), 3.5 years after she passed away.

Donating tissues and organs is only the start of the debate of what to do with the remains of deceased relatives. A critical issue still remains undiscussed: what to do with the clinical, genetic and environment data from a person who died? As people get sequenced, their clinical histories made accessible to them and wearable technology incorporated into clinical care, we need to think about how this data could be used for advancement of research.

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