Law in the Internet Society

Online Genomics Databases and the Future of Genetic Privacy

-- By HannahZale2 - 01 Apr 2015

Section I: Introduction

Increasingly vast genomics databases are being compiled and stored online, both by private corporations and public research institutions. In light of the ease with which this genomic data can currently be accessed, shared, stored, and sold online, I argue that a much more comprehensive set of genetic privacy and informed consent laws are needed.

Section II: The Wild West of genetic information online

Genetic data is not inherently different from other personal data (e.g. what you like to eat, your shopping preferences, where you travel, what workouts you perform, etc.) with respect to issues of online privacy. However, one big difference between genetic data and other data that is regularly tracked, stored, shared, and sold online by corporations and other entities is the heightened set expectations with regards to privacy that people have about their medical information (including, of course, genetic data). People might not actively think about the fact that smart phones track their whereabouts or other habits and preferences, and therefore are in all likelihood passively (without informed consent) giving this data away. In contrast, most people actively have an expectation that doctor-patient confidentiality exists, and that it applies across all mediums where medical information might be involved.

Informed consent to participate in research involving genetic information ought to include a thorough explanation and understanding of what can and will be done with the genetic data afterwards. This ought to include any implications that its possession or use might have for the individual’s family members (i.e. genetic relatives). Many of the companies amassing genomic databases have clearly fallen short of this standard of informed consent, and are unlikely to voluntarily obtain it without the introduction of legislation that would require it. 23 and Me is one (of many) such examples.(i), (ii) ,(iii)

Section III: GINA (and Its Shortcomings)

The Genetic Nondiscrimination Act (GINA), which was signed into law in 2008, is grossly inadequate in regards to protecting privacy and preventing discrimination. GINA was intended to protect Americans from discrimination on the basis of their genetics by individual health insurers (under GINA health insurers cannot set eligibility requirements or establish premiums or contribution amounts based on a person’s genetic information) and employers (GINA forbids employers from using a person’s genetic information in any decisions relating to hiring, firing, work assignments, or promotions, and also prohibits employers from requesting, requiring, or purchasing genetic information about an employee or employee’s family member). (iv)

However, GINA does not protect individuals’ genetic privacy, particularly in the research setting. In light of this significant lack of protection for individuals’ privacy under the Act, in the wake of GINA’s passage the Office for Human Research Protections (OHRP) of the Health and Human Services (HHS) has put forth recommendations for clinical researchers and institutional review boards. (v) However, these recommendations are merely that—they have yet to be signed into law. Furthermore, under GINA it is permissible for an employer, employment agency, labor organization, or joint labor-management committee to provide an individual’s genetic information the federal, state, or local authorities. (vi)

In light of GINA’s shortcomings and the ease and speed with which vast amounts of genetic information are being stored in databases online, a much more comprehensive set of laws are needed to protect individuals’ privacy, and ought to at the very least include more robust requirements for clinicians and corporations to obtain individuals’ informed consent before their genetic information can be obtained, bought, stored, shared, or studied.

Section IV: Problematic forthcoming policy measures: corporate involvement in the formulation of public policy and future of genetic privacy protection

It is highly problematic that corporations who are positioned to profit immensely from the advent and growth of online genomics databases (e.g. Google) are directly involved in the drafting of public policy in these areas. Google recently joined the Global Alliance for Genomics and Health (GAGH), a consortium of health care providers, research institutions, private corporations (including Microsoft). (vii) GAGH, which was founded in 2013 and met for the first time in March 2014, states as part of its mission statement and ongoing initiatives its plans to create freer exchanges of genetic data for the purpose of improving clinical research and health care. (viii) GAGH also states as core initiatives the development of standards for genomic privacy and security, “data safe havens,” data protection regulation, and improved standards for obtaining consent from genomics research participants. (ix)

A January 2014 MarketsandMarkets? report valued the global genomics market at $11 billion in 2013, and predicted it will reach $19 billion by 2018. (x) The fact that the entities who have the most to gain from a profits-perspective from easier sharing of genomic data are spearheading the efforts to implement standards for privacy and informed consent does not inspire confidence in our ability to provide any meaningful protections for individuals’ genetic privacy, particularly online.


(i) (ii) (iii) (iv) (v) (vi) (vii) (viii) (ix) (x)

You are entitled to restrict access to your paper if you want to. But we all derive immense benefit from reading one another's work, and I hope you won't feel the need unless the subject matter is personal and its disclosure would be harmful or undesirable. To restrict access to your paper simply delete the "#" character on the next two lines:

Note: TWiki has strict formatting rules for preference declarations. Make sure you preserve the three spaces, asterisk, and extra space at the beginning of these lines. If you wish to give access to any other users simply add them to the comma separated ALLOWTOPICVIEW list.


Webs Webs

r1 - 01 Apr 2015 - 02:40:35 - HannahZale2
This site is powered by the TWiki collaboration platform.
All material on this collaboration platform is the property of the contributing authors.
All material marked as authored by Eben Moglen is available under the license terms CC-BY-SA version 4.
Syndicate this site RSSATOM