Does family always matter? Public genomes and their effect on relatives

Cinnamon S Bloss

doi:10.1186/gm511

Abstract

Coinciding with the publication of the genome sequence of the HeLa cancer cell line last summer [1], US National Institutes of Health (NIH) administrators announced that they had been working closely with the family of Henrietta Lacks [2], the woman from whom the HeLa immortal cell line was derived, to address the family’s concerns regarding privacy and informed consent. NIH officials noted that ‘the full [HeLa] sequence data could potentially uncover unwanted information about people whose identity is widely known’ - namely the family of Ms Lacks [2]. Such unwanted information could include disease risks, response to drugs, ancestral roots, and in some cases an individual’s actual identity [3]. This article followed on the heels of another study published in March of this year that likewise presented a detailed account of the HeLa genome and included public posting of the data [4]. Days after publication of that article, a firestorm of commentary erupted on social media [5,6] and formal news outlets, questioning the ethics of the study and public deposition of the data. The posting of the data also reportedly upset the Lacks family, with one family member quoted as saying, ‘That is private family information…It shouldn’t have been published without our consent’ [7]. The NIH responded by entering into a much needed dialogue with the Lacks family to address these concerns. These events call attention to the issue of the impact of public release of an individual’s identified data on biological family members, and the need for empirical research in this area to inform policy-making with regard to data sharing.

Highlights

Coinciding with the publication of the genome sequence of the HeLa cancer cell line last summer [1], US National Institutes of Health (NIH) administrators announced that they had been working closely with the family of Henrietta Lacks [2], the woman from whom the HeLa immortal cell line was derived, to address the family’s concerns regarding privacy and informed consent
It appears that at least some members of the family feel that the information is their ‘private family information’, the use of which should be subject to their consent. This raises questions about individuals in other studies who have consented to have their genomes sequenced and agreed to put their identified data in the public domain. Should consent from those individuals’ family members be considered as well? Currently at least 13 people are known to have undergone genome sequencing with deposition of their identified data in public databases, all with informed consent
The Personal Genome Project (PGP) does not require consent from family members, but does strongly suggest that potential participants discuss the possible implications of involvement in the project with biological relatives before enrolling

Summary

Introduction

These events call attention to the issue of the impact of public release of an individual’s identified data on biological family members, and the need for empirical research in this area to inform policy-making with regard to data sharing. This raises a general issue about whether biological relatives have a ‘right’ to refuse, or consent, to another person’s desire to undergo genome sequencing themselves, and to publicly release their identified data.

Results

Conclusion