Genetic Privacy and Confidentiality:
The impact of greater knowledge on rights and power

Paul R. Billings MD, PhD
Chair, Board of Directors
Council for Responsible Genetics
5 Upland Road
Cambridge , MA 02140

Testimony delivered to the National Commission on Vital and Health Statistics Subcommittee on Privacy and Confidentiality in Washington, DC on January 12, 2005

Thank you for the opportunity to appear and speak with you today. The Council for Responsible Genetics (CRG) is the oldest, non-profit, unaligned biotechnology “watch dog” organization in this country. For more than 20 years, CRG has provided informed criticism, and with others engaged in political action, to highlight examples of genetic determinism and reductionism, and the use of biotechnology as a form of social control. I appear here as a member of the CRG Board of Directors and as a practicing human and clinical geneticist. I do not here represent my employer, Laboratory Corporation of America Holdings (LabCorp), and none of the views I express are policies or positions endorsed by the company. LabCorp is a major provider of healthcare and genetic testing in the United States; it has adopted a policy that supports protecting individuals against discriminatory uses of genetic test information and federal anti-discrimination legislation. If the Subcommittee wishes to have this policy, I can supply it.

Genetic or genomic testing is primarily conducted to identify health risks, make diagnoses or for other medical purposes. While forensic or “public safety” uses of DNA methods, including the DNA “fingerprinting” of all inhabitants of this country, may soon outstrip medically directed genetic testing, for now the results of these analyses primarily become a component of health information. For important reasons, health data are increasingly digital; technology has made it easy and inexpensive to accumulate, store and share health related data. This has significant implications for individuals and when considering genetic information, relatives.

In addition, technology has made it possible to assess an increasing number of factors that impact health, some of which are associated with genetics. Risks conferred by the genome, by mRNA expression in diseased tissues, or by arrays of protein levels in the blood are becoming accessible, validated by biostatistical methods and affordable by individuals. Soon, many of these approaches applied to human conditions will be deemed cost-beneficial or of significant public interest, so that third party payers will make decisions to cover these tests as benefits, and pay for them. This is an important event in the health insurance industry; since the information must be shared during the application process, it is also an issue in the life insurance business.

A founder of CRG, the labor leader Tony Mazzocchi, said many years ago, “ The problem with any screening and surveillance program is that it depends on who controls it and who administers it. In a perfect world, genetic screening might be a very adequate surveillance measure….However, this is not a perfect world”. (Ref upon request) With our view of the growing acceptance and digitization of genetic and genomic testing, along with other important trends in biotechnology arising in our social and economic milieu (as compared with, for instance, Cuba), in 1999 CRG began a review and project in order to define a “Genetic Bill of Rights”. After many years of study and political labor, the organization adopted a set of statements that we believe are essential to support individualism, community and freedom in the 21st century. A text reviewing this work (edited by Peter Shorett and Sheldon Krimsky) will soon be published and is entitled, Rights and Liberties in the Biotech Age: Why We Need a Genetic Bill of Rights (Littlefield, 2005). Article 7 of the Genetic Bill of Rights adopted by the CRG Board of Directors states, “All people have the right to genetic privacy including the right to prevent the taking or storing of bodily samples for genetic information without their voluntary informed consent”.

If we lived in a world where bad things did not happen and the fear of such outcomes did not materially affect individual’s lives, much of our discussion about privacy and confidentiality would be mute. But we do not. Discriminatory uses of genetic test results, and fears and perceptions of adverse outcomes as a result of genetic information, are very real and affect the conduct of genetic testing. They also limit the growth of the biotechnology industry that has recently turned to the development of diagnostics and other types of tests as an important early source of business revenue.

Individual autonomy surrounding personal information is central. Privacy is essential to exert control over one’s life and is an important component of normal human development (a view accepted primarily in the Occidental World). The presumption of confidentiality is essential to the functioning of many professions, and to balancing the power of social agencies and their agenda against that of individual autonomy. We live in a time when the primacy of the market (including its impact on notions of health), national defense, and the war on crime are frequently used as justifications for what might be perceived as intrusions in to the traditional sphere of personal liberty and the “right to be let alone”. Technology, including that which enables genomics and its related disciplines, is increasing the number of personal issues and social/cultural venues where conflict may arise between the personal use of information (including the right to keep it private and to ignore it), and social agencies’ wishes to use it for their own stated or hidden purposes. The key points are to establish the importance of the individual right, to defend with policy and interpreted law that tenet, and then to seek a balance of influences so that individual lives are improved as our society evolves and encumbers technology driven social change.

The importance of personal freedom in decision-making around health matters is undeniable. The role of confidentiality and privacy, along with enhanced access to high quality reliable information, is essential to moving the right to health (a right in the Universal Declaration of Human Rights) in to the 21st century. It is important to the improvement of medicine and medical genetics. Our method of financing healthcare in the United States, the movement to improve the quality of care by relying on evidence-based medicine and the assessment of practice data, along with enhanced public health information collections for many purposes, pose real problems in balancing legitimate goals. CRG believes that a restatement and proper enforcement of protections of privacy, and the identification and lessening of coercive powers applied to individuals that reflect social control and agendas not necessarily in the individual’s interest, are necessary now and will be in the future to properly resolve conflicts between individual and non-individual interests.

Thomas Jefferson said, “Vigilance is the eternal price of liberty”. Protecting the individual against the group will always be part of the American policy landscape and deserves our diligent attention. For health and healthcare to improve in an age of more and better health and genetic information, a newly invigorated commitment to privacy rights, along with others, is essential.

Paul R. Billings MD, PhD 1/12/2005