Review reveals ambiguous understanding of genetic privacy in US study participants

October 31, 2018, Public Library of Science
Credit: CC0 Public Domain

Confusion and ambiguity in how U.S. patients and researchers perceive genetic privacy is uncovered by a study published October 31, 2018 in the open-access journal PLOS ONE by Ellen W. Clayton from Vanderbilt University and colleagues.

To uncover the links between gene variants and disease, researchers must collect from participants. In the USA, researchers may obtain participants' consent for broad data sharing, which gives other investigators freedom to use their data for future research—but participants often cite privacy as a major concern. To investigate how researchers and participants understand genetic privacy, the authors of this study systematically reviewed 53 U.S.-based studies which examined perceptions of genetic privacy among the general public, patients and professionals. In total, the studies included over 47,000 participants.

The authors uncovered confusion and gaps in participants' understanding of genetic privacy. Many participants confirmed they were worried about genetic privacy; however, ambiguously-phrased questions often left their specific concerns unclear. Participants also frequently conflated privacy with confidentiality, control, and security.

Participants were frequently concerned about the amount of control they retained over their personal information, the use of their data by third parties, and confidentiality issues. Many were worried they could be harmed if genetic information was divulged to third parties like employers or insurers. However, participants often felt benefits such as getting information from genetic tests were more important than protecting privacy.

The authors note that, in general, the consent process could be improved with increased disclosure around future use of collected data by third parties. While the authors' findings are specific to the USA, the authors hope further research might identify best practices around genetic privacy, making the collection and use of genetic data more trustworthy for .

Clayton adds: "The picture of genetic privacy that emerges from this systematic literature review is complex and riddled with gaps. Much more needs to be learned about which concerns about genetic matter most to people as well as the social forces that influence their views in order to develop policies that create the trust necessary to allow people to make optimal use of advances in genomics."

Explore further: New file type improves genomic data sharing while maintaining participant privacy

More information: Clayton EW, Halverson CM, Sathe NA, Malin BA (2018) A systematic literature review of individuals' perspectives on privacy and genetic information in the United States. PLoS ONE 13(10): e0204417.

Related Stories

New file type improves genomic data sharing while maintaining participant privacy

October 17, 2018
Based on an analysis of data leakages and opportunities to prevent the potential misuse of genetic information, researchers have developed a new file format for functional genomics data that enables data sharing while protecting ...

Recent National Academies report puts research participants' rights at risk, say law scholars

October 11, 2018
In a Policy Forum article appearing in the Oct. 12 issue of Science, leading bioethics and legal scholars sound the alarm about a recent report from National Academies of Science, Engineering, and Medicine. The Academies' ...

US unveils first step toward new online privacy rules

September 25, 2018
The US administration called Tuesday for public comments on a "new approach to consumer data privacy" that could trigger fresh regulations of internet companies.

Congressmen question Google over kids' privacy on YouTube

September 21, 2018
Two members of Congress are calling on Google to address concerns that YouTube might violate children's privacy.

Health apps and the sharing of information with third parties

March 8, 2016
In a study appearing in the March 8 issue of JAMA, Sarah R. Blenner, J.D., M.P.H., of the Illinois Institute of Technology Chicago-Kent College of Law, Chicago, and colleagues examined the privacy policies of Android diabetes ...

A clinical trial wants your DNA – what should you do?

May 21, 2018
On May 6, the "All of Us" study started enrolling participants. This national study will be one of the largest ever examining the connection between genetics, behavior and medical outcomes, with a goal of 1 million or more ...

Recommended for you

Progress in genetic testing of embryos stokes fears of designer babies

November 16, 2018
Recent announcements by two biotechnology companies have stoked fears that designer babies could soon be an option for those who can afford to pick and choose which features they want for their offspring. The companies, MyOme ...

Gene editing possible for kidney disease

November 16, 2018
For the first time scientists have identified how to halt kidney disease in a life-limiting genetic condition, which may pave the way for personalised treatment in the future.

DICE: Immune cell atlas goes live

November 15, 2018
Compare any two people's DNA and you will find millions of points where their genetic codes differ. Now, scientists at La Jolla Institute for Immunology (LJI) are sharing a trove of data that will be critical for deciphering ...

Ashkenazi Jewish founder mutation identified for Leigh Syndrome

November 15, 2018
Over 30 years ago, Marsha and Allen Barnett lost their sons to a puzzling childhood disease that relentlessly attacked their nervous systems and sapped their energy. After five-year-old Chuckie died suddenly in 1981, doctors ...

Drug candidate may recover vocal abilities lost to ADNP syndrome

November 15, 2018
Activity-dependent neuroprotective protein syndrome (ADNP syndrome) is a rare genetic condition that causes developmental delays, intellectual disability and autism spectrum disorder symptoms in thousands of children worldwide. ...

The puzzle of a mutated gene lurking behind many Parkinson's cases

November 15, 2018
Genetic mutations affecting a single gene play an outsized role in Parkinson's disease. The mutations are generally responsible for the mass die-off of a set of dopamine-secreting, or dopaminergic, nerve cells in the brain ...


Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.