In this report, the authors examine the questions around access to genomic data. They argue that the real breakthrough in reconciling privacy and openness in genomics requires confronting head-on some fundamentally normative tensions that are escalated in the era of genomics and big data, and they suggest three points that will play a crucial role in navigating between privacy and openness.
Summary Points
• Advancing genomic research depends on the accessing and sharing of genomic data. However, the increasing need for sharing escalates the tension between genomic privacy and openness.
• Promoting openness while protecting privacy is a challenge that cannot be overcome only with technical solutions such as encryption and differential privacy. Although such solutions are crucial, we still need to confront some fundamental normative tensions that are intensified in the era of genomics and big data. Here are at least three:
The right to genomic privacy is not an absolute right. If privacy is understood as control over information or data, privacy is not about maximal levels of control, but rather about reasonable measures of control.
Although individual control is necessary, it is not a sufficient safeguard of privacy. Individuals’ willingness to be open about their data does not obviate responsibility for reducing privacy risks on the part of the data users.
Data governance models, such as data cooperatives, that enable meaningful and continuous roles of the individuals whose data are at stake hold promise for reconciling privacy and openness.