A Privacy Test
The sensitive nature of genetic and clinical information poses a significant ethical challenge to sharing data. Not all of it, however, is equally sensitive: a history of sexually-transmitted diseases, domestic violence, or mental health, for instance, may be more sensitive than an individual’s finances or geographical location. And although most data are anonymized in biobanks, re-identification happens intentionally and unintentionally. A practical remedy and perhaps the first step to facilitating data-sharing may be the development of a method to parse data by level of sensitivity.
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McGill University researchers Dr Stephanie Dyke and colleagues have taken on this challenge.3 They propose a “Data-Sharing Privacy Test,” a practical approach to identifying the most sensitive health-related data. It is composed of 3 main factors: the sensitivity of the information, the expectations of the individual with respect to the data being shared, and the probability and gravity of potential injury from possible re-identification of the data, intentional or not.
They define sensitive data as “data whose improper use, including unwarranted disclosure, could reasonably be expected to cause serious physical or moral harm, significant financial loss or excessive personal distress to the data subject and/or related others”. They lay out a list of 14 categories of sensitive data, including ethnicity, mental health, substance use, sexually-transmitted diseases, and reproductive care.
The categories that pertain to clinical care are routinely encountered in clinical practice and pose few new ethical conundrums in this context. Problems unique to the sharing of genomic information, as well as the unaddressed fact that the relevant players now include governments and private corporations are, however, of concern.
The authors describe several points-to-consider for genetic data, which can be boiled down to 3 main considerations: the severity of the genetic condition, whether the genetic condition is associated with stigmatizing information (for example, mental health, reproductive health, or a certain ancestry), and whether the genetic condition is heritable.
The challenge, as the authors admit, is whether this general framework can be a dynamic instrument to be used effectively not only in different societies, but also to respond to future developments in science. This challenge notwithstanding, other issues of informed consent and of regulations regarding the involvement of government organizations and private corporations remain to be satisfactorily addressed.
The greater interconnection of biobanks and researchers leads not only to enhanced statistical power, but to greater genetic diversity, expanding the number of people affected by this grand project. Embracing all the myriad variations of the human genome should, in theory, lead to rewards that all can share.
References
- Global Alliance for Genomics and Health. GENOMICS. A federated ecosystem for sharing genomic, clinical data. Science. 2016;352(6291):1278-80. doi: 10.1126/science.aaf6162
- Elger B. Ethical Issues of Human Genetic Databases: A Challenge to Classical Health Research Ethics? New York, NY: Routledge; 2010.
- Cambon-Thomsen A, Rial-Sebbag E, Knoppers BM. Trends in ethical and legal frameworks for the use of human biobanks. Eur Respir J. 2007 Aug;30(2):373-82.
- Cambon-Thomsen A. The social and ethical issues of post-genomic human biobanks. Nat Rev Genet. 2004 Nov;5(11):866-73.
- Dyke SO, Dove ES, Knoppers BM. Sharing health-related data: a privacy test? NPJ Genom Med. 2016 Aug 17. doi: 10.1038/npjgenmed.2016.24 [Epub ahead of print]
