From beyond the grave: Use of medical information from the deceased to guide care of living relatives

Tadros, Shereen, Carley, Helena and Lucassen, Anneke (2020) From beyond the grave: Use of medical information from the deceased to guide care of living relatives. Current Genetic Medicine Reports, 8, 147-153. (doi:10.1007/s40142-020-00196-6).

Abstract

Purpose of review: In order to inform patients of their genetic risks, access to the medical records and/or stored samples of their relatives is often helpful. We consider some of the obstacles to such access when these relatives are deceased and suggest how they might be navigated.

Recent findings: We explore an issue first highlighted in 2004 by Lucassen et al. (Br Med J 328:952-953, 2004) and re-evaluate it in the wake of novel technologies and mainstreaming of genomic medicine. We find that it is still an issue in practice despite professional guidelines advocating access to familial information (Joint Committee on Genomics in Medicine 2019) and that the Human Tissue Act 2004 is often wrongly constructed as a reason to block access. Access is often obstructed by failing to adopt the necessary relational concept of autonomy that applies in genetic medicine as reported by Horton and Lucassen (Curr Genet Med Rep 7:85-91, 2019) and by considering confidentiality to be absolute, even after death. In response to a recent legal case about the confidentiality of genetic test results, and their disclosure to family members (ABC v St George's Healthcare NHS Trust 2020), Dove et al. (J Med Ethics 45:504-507, 2019) suggested that a duty to consider the interests of genetic relatives could co-exist alongside a duty of confidentiality to a patient. In this way, healthcare professionals can use professional judgement about the relative value of genetic information to family members. This is equally relevant in accessing deceased relatives' information. A recent systematic review found a high level of acceptability of postmortem use of genetic data for medical research amongst participants and their relatives, and it is reasonable to assume that this acceptability would extend to clinical practice as reported by Bak et al. (Eur J Hum Genet 28:403-416, 2020).

Summary: Within clinical practice, access to medical records/samples of deceased relatives is often obstructed unnecessarily, potentially resulting in harm to the living relatives seeking advice. Consent to such access is important but need not be the bureaucratic hurdle that is often imposed.

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Contributors

Author: Anneke Lucassen

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