Judith W. DeCew

In this anthology of new and classic articles, fifteen noted feminist philosophers explore contemporary ethical issues that uniquely affect the lives of women. These issues in applied ethics include autonomy, responsibility, sexual harassment, women in the military, new technologies for reproduction, surrogate motherhood, pornography, abortion, nonfeminist women and others. Whether generated by old social standards or intensified by recent technology, these dilemmas all pose persistent, 'nagging,' questions that cry out for answers

I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research:(1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research.

This paper begins with a discussion of the value of privacy,especially for medical records in an age of advancing technology.I then examine three alternative approaches to protection ofmedical records: reliance on governmental guidelines, the useof corporate self-regulation, and my own third hybrid view onhow to maintain a presumption in favor of privacy with respectto medical information, safeguarding privacy as vigorously andcomprehensively as possible, without sacrificing the benefitsof new information technology in medicine. None of the threemodels I examine are unproblematic, yet it is crucial to weighthe strengths and weaknesses of these alternative approaches.

Most of us have certain intuitions about moral rights, at least partially captured by the ideas that: (A) rights carry special weight in moral argument; (B) persons retain their rights even when they are legitimately infringed; although (C) rights undoubtedly do conflict with one another, and are sometimes overridden as well by nonrights considerations. I show that Dworkin's remarks about rights allow us to affirm (A), (B), and (C), yet those remarks are extremely vague. I then argue that Feinberg's more comprehensive and precise theory, designed to do justice to all three theses, cannot assure us of (A), that rights are not merely one consideration to be weighed in the balance with heterogeneous others. I show how Feinberg accepts (C) despite being drawn toward an alternative absolutist theory of rights and commits himself to (B) through his rejection of prima facie rights. But his promising distinction between recognition and enforcement of a right, which helps give some sense to (B) despite its tension with (C), undermines the force of rights in moral argument apparently intended by (A). We thus learn that Feinberg's and Dworkin's accounts of rights are incompatible, though each is correct in important ways. Contrasting their views allows us to clarify the implications and consistency of alternative theses about rights, one step toward meeting the challenge of developing a theory which shows more adequately how respect for rights is to be combined with other intuitions about rights and their relation to other values.

Suppose we agree to reject the view that privacy has narrow scope and consequently is irrelevant to the constitutional privacy cases. We then have (at least) these two options: (1) We might further emphasize and draw out similarities between tort and constitutional privacy claims in order to develop a notion of privacy fundamental to informational and Fourth Amendment privacy concerns as well as the constitutional cases. We can cite examples indicating this is a promising position. Consider consenting homosexuality conducted in one's home, for instance. We view it as a private matter, whether the state is seeking to regulate the behavior, or if others are attempting to gain or exploit information about it. I believe basic conceptual similarities between tort and constitutional interests can be identified by showing that there is a range of similar reasons for protecting both tort and constitutional privacy concerns. We might worry, however, that a comprehensive concept of privacy may be too general to be very useful, given that privacy violations can be so diverse, and can arise, for example, from misuse of confidential information, from conduct that is intrusive even if no information is gained or disclosed, from disturbance of an intimate relationship, or from disruption of various other important aspects of one's life.(2) We could concede that whatever “privacy” means in the tort and Fourth Amendment cases, it means something different in the constitutional cases. Nevertheless, we might take that “something else” seriously as a distinct but legitimate use of the term which is not “spurious” but is reflected in our ordinary language. This appears to me to be a fruitful alternative. After all, contrary to Henkin's view that tort privacy is “what most people mean by privacy,” the term is often used in contexts beyond informational privacy and clearly related to the interests at stake in the constitutional cases. Thus, for example, in a pamphlet explaining how to protect children by teaching them how to say “No!” to strangers without making them paranoid or antisocial, parents and teachers are told, Children have a right to privacy. Teach it. Reinforce it. One of the ways to help children prevent sexual assault is to encourage them to develop a sense of physical integrity. A sense that they have a right to their own body space and privacy. Just as we allow them to close the door when they use the bathroom, we must allow them to say no to any unwanted physical affection and touch. Flora Calao and Tamar Hosansky, “The Key to Having Fun is Being Safe: Teaching Personal Safety to Children,” The Safety and Fitness Exchange, 1123 Broadway, N.Y., N.Y. 10010. Unfortunately, the most obvious starting point for identifying the sense of private relevant to the constitutional cases is extremely worrisome. The Court itself has said ... only personal rights that can be deemed “fundamental”...are included in this guarantee of personal privacy...the right has some extension to activities relating to marriage...procreation...contraception...family relationships... and child rearing and education.Roe v. Wade, 410 U.S. 113 (1973).The difficulty, of course, is that little more is offered by way of explanation of which rights are “personal” or “fundamental” or both. Focusing on marriage makes Roe v. Wade difficult to understand given that Ms. Roe was unmarried, and attending only to family issues does not help us make sense of the Stanley case protecting one's right to view pornography in one's home. It is perhaps more problematic that decisions such as what color shoes to wear are reasonably viewed as personal, yet are far from fundamental enough to warrant protection. And regulations governing the draft and employment, for example, are not viewed as privacy invasions although they might be said to interfere with matters of one's life that are both fundamental and personal in the vague sense described.Before we give up in frustration, however, I would urge that we recall that even in tort law the notion of privacy has been evolving through a constellation of judgments. Although there is no fixed way of using the term which we then proceed to analyze, the concept of privacy has not in those cases been taken to be meaningless or empty. Similarly, there is reason to believe that the scope of a “personal and fundamental” notion of privacy relevant to the constitutional cases can be further delineated through a consideration of cases, especially since it seems to me that in many cases application of the term is clear and unproblematic. A decision to have a vasectomy, for example, can uncontroversially be said to be a personal and fundamental one, and it is in that sense private. We fail to acknowledge the personal significance in an individual's life of forcing or refusing him the operation if we deny that this important sense of privacy is relevant to such a decision merely because an interest in determining for oneself what one ought to do is also at risk.Of course, once it is settled that something is a private matter, it is a separate issue to decide whether or not, in some social context, an invasion of it can be justified. Thus, I would claim, a mandatory sterilization program for male recidivists or for those in a country suffering grave poverty and overpopulation does invade privacy, and the social or legal question is whether or not the invasion can, in the particular circumstances, be justified. Although all will agree that both individual and social interests must be balanced by moral philosophers as well as the courts, in conflicts we will not always agree on the weight to be accorded individual claims.I have not provided a constitutional defense for citing privacy as one right at stake in the constitutional privacy cases. Nor have I attempted to enter the debate about how strictly to interpret the Constitution. But if I am correct, then we can agree there is an important interest in privacy at issue in those cases without merely conflating privacy and autonomy or liberty, and can continue the process of marking out its boundaries. If we reach such agreement, we will have made considerable progress. Moreover, the implications of this view are significant. Current constitutional standards, controversial though they may be, require “strict scrutiny” for cases concerning “fundamental values,” and privacy has been judged to be one such value. Thus these privacy claims have a greater chance of being protected when they conflict with other rights or general interests than they would have if only liberty, or freedom from governmental interference, were involved