COMPETITION 56

AFFIRMATIVE CLAIMS TO PROTECT RIGHTS IS INCOMPATIBLE WITH COMMUNITARIANISM

PRIVACY ADVOCATE’S REJECTION OF THE PUBLIC DUTY PARADIGM IGNORES THE INDIVIDUAL’S RESPONSIBILITY TO THE COMMUNITY

Helena Gail Rubinstein, Director of Policy Analysis and Program Development, Group Insurance Commission of the Commonwealth of Massachusetts; "If I Am Only for Myself, What Am I? A Communitarian Look at the Privacy Stalemate," American Journal of Law & Medicine, 1999, 25 Am. J. L. and Med. 203, EE2001-JGM, p.223

Inherent in the privacy advocates' rejection of the public duty paradigm is a refusal to recognize, in exchange for the vast improvements in medical care, a correlative responsibility on the part of the individual, as a potential consumer of health care services, toward the community. As individuals rely on their right to be let alone, they shift the burden on others in the community to accept the responsibility for providing the data needed to advance medical and health policy information. Their individualist vision threatens the entire community, because when particular segments of the community opt out of participation as data subjects, the resulting value of the research is questionable, and many worthwhile protocols could be abandoned on that basis. Thus, a policy that requires consent before each use of health data might have unintended and undesirable consequences for our medical care and health policy. n186

MUST REPLACE THE LANGUAGE OF RIGHTS WITH THE LANGUAGE OF DUTY

Just as technology's limitations would make this symposium topic unimaginable twenty years ago, the speed at which technology advances in the information age may make some of the conclusions seem quaint twenty years hence. However, the fundamental question posed by this Article about whether the community should handcuff vital research in order to protect the autonomy interests of some of its members is timeless. Approximately two thousand years ago, Rabbi Hillel n214 posed three questions that are particularly relevant to the successful [*231] resolution of this issue. He asked first, If I am only for others, who am I? This question challenges individuals to look after their own welfare. In bringing concerns about data misuse to the forefront, privacy advocates have ensured that data security procedures will be strengthened. Whatever regulations are ultimately promulgated will require data users to maintain the utmost caution when working with the data in order to maintain the privacy and dignity of the data subjects. He next asked, If I am only for myself, what am I? This question challenges individuals to recognize their responsibility to the common good. This Article argues that citizens must accept their dual role as both consumers of medical benefits and providers of data. Members of a community should not accept all of its benefits while refusing to contribute to its support. Along this principle, individuals should not assert their "right to be let alone" when it is time to contribute to the collective good, but ask for and accept the help of the collective when receiving medical care. Privacy advocates must demonstrate flexibility and understanding to prevent restrictions on disclosure from threatening the utilization of medical records and claims data for the public good. And finally, he asked, If not now, when? For several years, privacy advocates, health policy analysts, encryption specialists and others interested in the outcome of this question have watched legislatures unsuccessfully debate this thorny issue. By replacing rights language with reciprocal duties language, legislation can be enacted to satisfy the needs and concerns of privacy advocates and the health research community alike.