Genetic privacy and the use of archival human material in genetic studies – current perspectives
D Gareth Jones
Department of Anatomy, University of Otago, Dunedin, New Zealand
Abstract: There has been considerable debate over a number of years on the ethical issues raised by the research uses to which archival human material can be put. Material of this nature has fitted into two categories: tissue in pathological collections and museums, and tissue removed at surgical operations. Considerable emphasis has been placed on whether the material is anonymous or whether it can be/has been de-identified or anonymized. These have emerged as of considerable significance for the role and nature of informed consent under a variety of circumstances. A guiding principle has been the protection of the donor's privacy. Debate on the use of archival material has raised the question of the relationship between it and the subjects from whom it came. Much of the debate was prompted by various retained organs scandals that came to light in the 1990s. The uncertainty underlying many of these deliberations was exposed when attention turned to genetic analyses. Discussions of the uses of archival material for genetic studies have proceeded for well over 20 years as it was realized that genetic information has the potential to provide increasing amounts of information about an individual's (and their family's) likely future, particularly in terms of physical and mental well-being. It was also becoming apparent that there is increasing tension between the relative benefits of the research project for medicine and risks to participants' privacy. These considerations took on added dimensions when the spotlight turned onto the family of Henrietta Lacks and the HeLa cell lines, prompted by publication of the sequencing of the genome of HeLa cells. What became obvious was that much of the work on HeLa cells over a period of 60 years had taken little account of the wishes or privacy of the family, thereby abrogating fundamental ethical values that had been gradually emerging in other discussions on archival human material. The scene was now set for finding more satisfactory ways forward, while acknowledging the complex dimensions of consent, confidentiality, privacy, exploitation, and anonymity in the genetic arena. In responding to these developments, the ways in which genetic privacy can be protected are discussed, alongside querying whether this will continue to be feasible in future alongside the increasing capabilities of genetic technology.
Keywords: HeLa cell lines, Henrietta Lacks, informed consent, ethical values, pathological collections, anonymized tissue
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