Genetic privacy involves the right or mandate of personal privacy concerning the storing, repurposing, provision to third parties, and displaying of information pertaining to one's genetic information. The advent of new technologies streamline high-throughput, low-cost sequencing of human genomes that raises important ethical concerns about the future of healthcare.
This section needs expansion. You can help by adding to it. (December 2016)
Dr. Yaniv Erlich conducted a 2013 study that revealed vulnerabilities in the security of public databases that contain genetic data. The study reported a method to discover the identity of anonymous research subjects whose genomes had been sequenced as part of a genomics project. Research subjects could sometimes be identified by their DNA alone.
Mark Bender Gerstein, a Yale professor who studies large genetic databases notes that "research subjects who share their DNA may risk a loss of not just their own privacy but also that of their children and grandchildren, who will inherit many of the same genes".
Furthermore, the vast databases of corporations or states might get breached by criminals or governments. There is a controversy regarding the responsibility a DNA testing company has to ensure that leaks and breaches do not happen. Regulation rules are not clearly laid out. What is still not determined is who legally owns the genome information: the company or the individual whose genome has been read. There have been published examples of personal genome information being exploited. Additional privacy concerns, related to, e.g., genetic discrimination, loss of anonymity, and psychological impacts, have been increasingly pointed out by the academic community as well as government agencies.
Dr. David Altshuler of the Broad Institute of Harvard and M.I.T. notes that the amount of genetic data that has been gathered so far is minuscule compared with what will be coming in the next few years, making it important to address the problems before the data deluge makes them worse, saying that they "see substantial issues" and "want to have serious discussions now".
This section needs expansion. You can help by adding to it. (January 2017)
A 2015 study found that state genetic privacy laws take three alternative approaches to protecting patient privacy: requiring informed consent on the part of the individual; restricting discriminatory usage of genetic data by employers, health care providers or insurance companies; or limiting redisclosure without the consent of the individual or defining genetic data as the 'property' of the individual" and that "giving users control over redisclosure encourage the spread of genetic testing, but that the informed consent approach deters individuals from obtaining genetic tests".
In the United StatesEdit
The Genetic Information Nondiscrimination Act of 2008 (GINA) protects the genetic privacy of the public, including research participants. The passage of GINA makes it illegal for health insurers or employers to request or require genetic information of an individual or of family members (and further prohibits the discriminatory use of such information). More information on GINA is available here.
In the United States, biomedical research containing human subjects is governed by a baseline standard of ethics known as The Common Rule, which aims to protect a subject's privacy by requiring "identifiers" such as name or address to be removed from collected data. A 2012 report by the Presidential Commission for the Study of Bioethical Issues stated, however, that "what constitutes 'identifiable' and 'de-identified' data is fluid and that evolving technologies and the increasing accessibility of data could allow de-identified data to become re-identified". In fact, research has already shown that it is "possible to discover a study participant's identity by cross-referencing research data about him and his DNA sequence … [with] genetic genealogy and public-records databases". This has led to calls for policy-makers to establish consistent guidelines and best practices for the accessibility and usage of individual genomic data collected by researchers.
Privacy protections for genetic research participants were strengthened by provisions of the 21st Century Cures Act (H.R.34) passed on 7 December 2016 for which the American Society of Human Genetics (ASHG) commended Congress, Senator Warren and Senator Enzi.
To balance data sharing with the need to protect the privacy of research subjects geneticists are considering to move more data behind controlled-access barriers, authorizing trusted users to access the data from many studies, rather than "having to obtain it piecemeal from different studies".
- Identity Tracing
- Here the aim is to link between an unknown genome and the concealed identity of the data originator by accumulating quasi-identifiers − residual pieces of information that are embedded in the dataset − and to gradually narrow down the possible individuals that match the combination of these quasi-identifiers.
- Attribute Disclosure Attacks via DNA (ADAD)
- Here the adversary already has access to the identified DNA sample of the target and to a database that links DNA-derived data to sensitive attributes without explicit identifiers, for example a public database of the genetic study of drug abuse. The ADAD techniques match the DNA data and associate the identity of the target with the sensitive attribute
- Completion Techniques
- Here the adversary also knows the identity of a genomic dataset but has access only to a sanitized version without sensitive loci. The aim here is to expose the sensitive loci that are not part of the original data.
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- Yaniv Erlich; Arvind Narayanan (2013). "Routes for breaching and protecting genetic privacy". arXiv: [q-bio.GN].