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Introduction
The goal of this article is to explore how a social justice framework can help illuminate the role that consent should play in health and science policy. In the first section, we set the stage for our inquiry with the important case of Henrietta Lacks. Without her knowledge or consent, or that of her family, Mrs. Lacks's cells gave rise to an enormous advance in biomedical science--the first immortal human cell line, or HeLa cells. In the second section, we provide a very brief sketch of the theory of social justice with which we operate, a theory that explicates the demands of justice in terms of six essential dimensions of well-being, of which health is one, as is self-determination, and that is centered around twin commitments to the promotion of a sufficient level of well-being and the moral importance of addressing concerns about systematic disadvantage. We also consider the relation of our theory to concepts like the common good or public interest.
We then go on in the third section to address how our account of self-determination, particularly as it relates to insights from J. S. Mill, provides the theoretical backdrop for an important question in the ethics of health and science policy--whether some liberties matter more and why. Our core theoretical claim is that not all liberties and immunities from interference are on a moral par and thus that they do not all merit the same level of protection in public policy.
We close in the fourth part by illustrating how our theoretical apparatus frames and helps resolve concrete challenges about consent and privacy in health and science policy, using an example from HIV testing as well as the Henrietta Lacks case.
Henrietta Lacks and the HeLa Cells
In 1950, Henrietta Lacks was a poor, African American woman who had recently moved with her family to Baltimore, Maryland, from rural Virginia. At the time, Mrs. Lacks was a young mother of five with little formal education. She was becoming progressively more ill with pain in her lower abdomen and eventually went to Johns Hopkins Hospital for treatment, the only hospital in the region that at the time provided medical care to African Americans.1 Unusual among...