Genetic privacy

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.[1][2] The advent of new technologies streamline high-throughput, low-cost sequencing[3] of human genomes that raises important ethical concerns about the future of healthcare.

Issues

Dr. Yaniv Erlich conducted a study in 2013 that revealed vulnerabilities in the security of public databases that contain genetic data. Erlich's study reported a method to discover the identity of anonymous research subjects whose genomes had been sequenced as part of a genomics project.[4] As a result, research subjects could sometimes be identified by their DNA alone. [5]

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".[5]

Furthermore, the vast databases of corporations or states are susceptible to get breached by criminals or governments.[5] There is a controversy regarding the responsibility that 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.[6] Additional privacy concerns, related to, e.g., genetic discrimination, loss of anonymity, and psychological impacts, have been increasingly pointed out by the academic community[6][7] as well as government agencies.[8]

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 (As of 2013) 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".[5]

The American Society of Human Genetics has brought up issues about administering genetic tests on children. Moreover, they infer that this could lead to negative consequences for the children. Some of the negative consequences that this could lead to include the child’s likelihood of getting adopted which as a result could lead the child to suffer from self esteem issues; the child’s well-being could also suffer because of things like paternity testing or a custody battle requiring this type of information.[9]

Regulations

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".[10]

When the access of genetic information is regulated it can prevent insurance companies and employers from reaching such data. Further, this could avoid issues of discrimination which could oftentimes leave an individual whose information has been breached without a job or without insurance.[9]

In the United States

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.[11]

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.[8] 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".[8] 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".[12] 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.[13]

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.[14][15][16][17]

Other

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".[4][5]

In October 2005, IBM became the world's first major corporation to establish a genetics privacy policy. Its policy prohibits using employees' genetic information in employment decisions.[18]

Breaching techniques

According to a 2014 study genetic privacy breaching by Yaniv Erlich and Arvind Narayanan techniques fall into three categories:[19]

  • 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.

See also

References

  1. ↑ "Genetic Privacy (definition)". reference.md. Retrieved 29 December 2016.
  2. ↑ "From genetic privacy to open consent" (PDF). Retrieved 29 December 2016.
  3. ↑ Lunshof, Jeantine E.; Chadwick, Ruth; Vorhaus, Daniel B.; Church, George M. (May 2008). "From genetic privacy to open consent". Nature Reviews Genetics. 9 (5): 406–411. doi:10.1038/nrg2360. ISSN 1471-0056.
  4. 1 2 "Genetic privacy". Nature. 24 January 2013. pp. 451–451. doi:10.1038/493451a. Retrieved 29 December 2016.
  5. 1 2 3 4 5 Kolata, Gina (16 June 2013). "Poking Holes in Genetic Privacy". The New York Times. Retrieved 29 December 2016.
  6. 1 2 De Cristofaro, Emiliano (2012-10-17). "Whole Genome Sequencing: Innovation Dream or Privacy Nightmare?". arXiv:1210.4820.
  7. ↑ Curtis, Caitlin; Hereward, James (December 4, 2017). "It's time to talk about who can access your digital genomic data". The Conversation. Retrieved May 21, 2018.
  8. 1 2 3 "Privacy and Progress in Whole Genome Sequencing". Presidential Commission for the Study of Bioethical Issues. Retrieved 30 November 2016.
  9. 1 2 Anderlik, Mary R; Rothstein, Mark A. (2001). "Privacy and Confidentiality of Genetic Information: What Rules for the New Science?". Annual Review of Genomics and Human Genetics. 2: 401–433.
  10. ↑ "Privacy Protection, Personalized Medicine and Genetic Testing" (PDF). Retrieved 29 December 2016.
  11. ↑ "Privacy in Genomics". National Human Genome Research Institute (NHGRI). Retrieved 29 December 2016.
  12. ↑ Check Hayden, Erika. "Privacy loophole found in genetic databases". Nature. doi:10.1038/nature.2013.12237.
  13. ↑ Gutmann, Amy; Wagner, James W. (2013-05-01). "Found Your DNA on the Web: Reconciling Privacy and Progress". Hastings Center Report. 43 (3): 15–18. doi:10.1002/hast.162.
  14. ↑ "ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act | ASHG". ASHG. Retrieved 2 January 2017.
  15. ↑ "ASHG supports Genetic Privacy Provisions in 21st Century Cures Act". EurekAlert!. Retrieved 2 January 2017.
  16. ↑ "Congress passes 21st Century Cures Act with billions for new research, treatments". CBS News. Retrieved 2 January 2017.
  17. ↑ "Congress acts to protect the most personal data – genetic information". Pine Bluffs Post. Retrieved 2 January 2017.
  18. ↑ "IBM100 - Pioneering Genetic Privacy". 7 March 2012. Retrieved 2 January 2017.
  19. ↑ Yaniv Erlich; Arvind Narayanan (2013). "Routes for breaching and protecting genetic privacy". arXiv:1310.3197 [q-bio.GN].

Further reading

  • The Right to Know and the Right Not to Know: Genetic Privacy and Responsibility, ISBN 9781107076075
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