Genetic Technologies and Their Implications for Women

Gender neutral language has been religiously observed by many people in recent years. I use it myself, and usually insist on it in my editorial work, to ensure that the reader or listener does not interpret what is intended to apply to both genders as only applicable to one. This preference for gender neutral language embraces the avoidance of pronouns and nouns that may be intended to be generic but are often construed otherwise. To insure gender neutrality, the possibility of confusion between generic and gender specific language needs to be considered. Although clarifying constructions are sometimes more awkward than the supposedly generic ones, clarity is worth the price. In addition, the awkwardness may serve the strategic purpose of provoking some individuals to recognize inadvertent sexist tendencies in their interpretations of supposedly generic language.

Despite these points favoring gender neutral language, its use entails ethical pitfalls that need to be identified and avoided. The principal pitfall occurs when the gender neutrality obscures differences that are relevant to evaluative judgments. The aim of this Article is to overcome this pitfall with regard to genetic technologies by focusing on their implications for women. In the area of reproduction in which genetic technologies are often discussed, the tendency to use gender neutral language has become common, misleadingly masking significant sex and gender differences that must be examined if men and women are to be treated fairly as individuals. Sex and gender differences sometimes lead to disproportionate burdens and benefits for which laws and policies are needed to reduce inequities between women and men either as groups or as individuals.

In what follows, therefore, I begin by identifying empirical differences that occur in human genetics, medical genetics, and clinical genetics, and then track some of the psychosocial gender differences that occur in relation to genetic conditions. Psychosocial differences encompass not only relationships between individuals but also between employers and employees, insurance companies and potential customers, medical personnel and patients, government and citizens. Next, I consider some of the differences identified with regard to whether they are changeable, and whether they reflect disproportionate or inequitable impact on women. I isolate two categories of differences as necessary considerations in policies or laws intended to promote gender justice: those that involve inequity and are changeable, and those that involve inequity and are not changeable. For both categories I suggest a way of alleviating gender disparities. I do not call for the dissolution of gender inequity because I do not think that is possible. I do, however, argue for achieving the ideal of gender equality as fully as possible.

Biology, Justice, and Women’s Fate

Mary Mahowald's paper, "Genetic Technologies and Their Implications for Women," insightfully considers the way genetic technologies affect women differently than men, the reasons for these differences, and whether these differences can or should matter. By facing women's unique biology directly, Professor Mahowald avoids the limits of a gender neutral approach that pretends there are no differences between men and women. Working towards gender equality in the use of genetic technologies and elsewhere requires attending to the biological and power differences between the sexes.

What intrigued me most about Professor Mahowald's paper is its theme of fate and fairness. Mahowald notes that "[i]n very fundamental ways, as Simone de Beauvoir observed decades ago, biology informs destiny for women." But understanding how biology becomes women's destiny and whether this result is just, depends on a distinction between fate and fairness. According to Mahowald, certain implications of genetic technologies for women depend entirely on biology, while others depend on socially-determined factors as well. Those that stem solely from biology are pretty much inevitable-they are women's fate. However, those that stem from a combination of biology and social causes should be subject to scrutiny to determine whether they are fair.

Mahowald cites H. Tristram Englehardt's suggestion that the unequal distribution of physical traits among individuals is due to "failures of fortune rather than failures of fairness" and occurs "naturally, and apparently, inevitably." Although inequality that results from women's biological fate may be unfortunate, it is not necessarily unjust.

Moreover, Mahowald points out that this distinction between what is unfortunate and what is unfair, between immutable fate and changeable injustice, is not the whole story. Biology cannot be unjust; but society's response to biological difference may be. Mahowald explains several different philosophical approaches to such "naturally occurring inequality" and adds her belief that our concern for gender justice requires that we should at least seek to minimize gender inequality in the use of genetic technologies. "If gender justice is desirable," she concludes, "then efforts should be made to reduce inequalities occasioned by differences between the sexes. Where inequitable differences are not changeable, as in the different reproductive roles of men and women, measures can still be introduced to reduce the gap."

I agree with Mahowald. Even if we accept the distinction between what is unfortunate and what is unfair, we can work to achieve gender justice. In addition, however, I believe that the basic distinction between fate and fairness needs to be complicated by a recognition that the very notion of "naturally occurring inequality" is already influenced by gender and other inequalities of power. Race, in particular, shapes the way our society determines which inequalities are "natural." Women's so-called biologically inevitable fate appears more changeable on closer inspection. As a result, it is more difficult to separate fate from fairness than Mahowald's article suggests.

Sex Selection, Nondirectiveness, and Equality

Sex selection is one of the most difficult moral dilemmas that genetic counselors face, given their moral and feminist aversions to such a use of prenatal testing and their nondirective ethos. Many genetic counselors condemn sex selection because it denies equality between the sexes. Yet, they are committed to the ethos of nondirectiveness out of a similar concern for equality and justice, as nondirective counseling seeks to protect equality by giving voice to individual perspectives and values and by empowering the disenfranchised. While most master's-level genetic counselors ultimately accept the use of sex selection based on their commitment to protecting client autonomy, the procedure nevertheless results in "cognitive dissonance" for genetic counselors who struggle with these conflicting moral principles.

Is the dilemma posed by this commitment to equality resolvable or must genetic counselors choose between nondirectiveness and a rejection of sex selection? In other words, if they care about equality, must genetic counselors remain nondirective to the extent that they grant requests for sex selection without expressing their disapproval? Or should they reject nondirectiveness, at least with regard to sex selection, in the interest of promoting equality? Or is there a third alternative--can the problem be reframed such that the dilemma is dissolved?

In order to attempt to resolve or address this conflict, we must first expose the conceptual underpinnings of the moral conflict raised by certain uses of genetic technology such as sex selection. Therefore, in this Article, I will examine the ways in which a concern for equality and justice can support two seemingly contradictory positions: a commitment to nondirectiveness and an aversion to many forms of sex selection. I will begin, in Part I, by presenting the equality-based arguments for rejecting the practice of sex selection, particularly when used in the context of cultural attitudes that devalue women. Part II will discuss nondirectiveness as articulated in the literature, arguing that among the principles underlying nondirectiveness is a concern for equality. Finally, Part III outlines possible ways of resolving this conflict.

The Road to Eugenics

The delineation of the "fit" from the "unfit" is ancient. Ancient Greeks proposed to control mating among the guardian (upper) class to ensure that the offspring would produce the "best and the brightest." In Plato's Republic, Socrates explores the idea that "a life spent in the doctor's hands is not worth having," that medicine should only be practiced on those who have healthy constitutions and healthy habits; and "weak" parents should not be allowed to have "weak" children. The American Eugenics Movement in the 1920s targeted as "unfit" individuals with epilepsy, criminals, the crippled and deformed; persons who were mentally defective or who had low intelligence; patients with communicable diseases such as syphilis, tuberculosis, or leprosy; alcoholics and drug abusers; poor people; and Eastern European immigrants to the United States. The Nazis marked Jews, Gypsies, and other so-called non-Aryan peoples, individuals who were mentally defective, and persons with incurable or mental illnesses--to name a few. In the heyday of eugenics, sterilization, infanticide, euthanasia, or a variety of "final solutions" were tools for the prevention or elimination of the "unfit."

Today, scientific advances in genetics have improved the prospects for negative genetics through the initiation of population screening, testing of individuals and families who are perceived at risk for genetic disorders, presymptomatic testing for late onset genetic disease, preimplantation genetic diagnosis, in vitro fertilization, genetic counseling, prenatal diagnosis, with the option for selective abortion of affected fetuses, with potentially thousands of genetic disorders, and even innocuous genetic variations. There also have been persistent attempts to link genetics with abusers of alcohol or drugs and with perpetrators of violent crime with sophisticated scientific techniques that were not available during the heyday of the American Eugenics Movement.

Today, however, we are concerned not only with persons with genetic disease who may be stigmatized as unfit but also with those who are carriers of recessive genetic disorders, pregnant women, newborns and, in fact, everyone. We all have at least five recessive genes, but this may be just the tip of the iceberg. When the human genome is mapped, many more potentially harmful genes – recessive and otherwise – will be unveiled in each of us. Psychoses, hypertension, diabetes, early and late-appearing cancers, degenerative disorders, susceptibility genes for communicable diseases, genes for various mental deficiencies, aging genes, and other variations and disorders will be ascertained. Consequently, in this day of rapid advances in genetics, we all are potentially able to pass "unfit" disorders to subsequent generations. Since we are now in the same boat, scientific advances in the understanding of the human genome may be one of the best defenses against a coercive eugenic society. We rarely discriminate against those who are "like ourselves."

Critique and Commentary on "The Road to Eugenics"

Preparing my paper on Medicaid managed care and reproductive genetics gave me the opportunity to reflect on Dr. Bowman's very thoughtful and incisive essay on eugenics. Bowman explains how eugenics has been practiced from ancient times to the present. He further describes how some policies and programs, laws and regulations, have intentionally and inadvertently brought about eugenic practices and/or results.

Bowman stresses that minorities and other social undesirables are particularly at risk to eugenic practices. With the mapping of the human genome, problems which were once considered social in nature like alcoholism and criminal behavior will be linked to genetics. Thus, rather than being treated through traditional psycho-social remedies, these behaviors may be approached like other genetic disorders. This approach may allow us to dismiss our responsibility to address these problems as a society.

Bowman notes that laws and practices with eugenic implications are often designed for other purposes. Medicaid managed care was developed to capture soaring health care costs and to increase access to health care among the poor. Reproductive genetics creates a unique set of circumstances in the context of managed care which may also have unintended implications for low-income people and people of color. Medicaid managed care models ration the delivery of health care through gatekeepers and coordinators who decide what types of and how much health care will be available to an enrollee. These models raise serious questions about what kinds of health care problems deserve attention and care, how much care recipients should receive, and from whom they should receive it. Decisions regarding these questions ultimately influence the health care choices people make, such as whether to keep or abort a "defective" fetus when the service may or may not be available or paid for. Thus, while the actions of gatekeepers and coordinators may not constitute intentional eugenics, the effect of these actions may be the same.

Genetic Testing in Children and Adolescents: Parental Authority, the Rights of Children, and Duties of Geneticists

During the past decade technological capabilities in molecular genetics have expanded exponentially. Concomitant with technological growth developed concern about using new molecular technologies to generate personal genetic information about individuals and families who are coping with various genetic disorders. Geneticists began to scrutinize the relationships that arise in the context of genetic counseling, and, in particular, several geneticists and psychologists suggested that no children should ever be tested for the gene that causes Huntington disease, even when testing is requested by their parents. This suggestion raised several issues that have direct bearing on decisions about genetic testing, including the nature of the disease and the availability of treatment, the roles of parents and the rights of children within the family, and the obligations of geneticists who participate in both testing and counseling.

One potential effect of the policy suggested for Huntington disease was a realignment of the professional and personal relationships that arise when a patient or family seeks genetic evaluation and help. Geneticists and genetic counselors have traditionally acted from a perspective of providing information and counseling that will help patients and families understand and cope with their genetic problem on their own terms, within their own constellation of circumstances. If geneticists institute policies about who should or should not have access to genetic tests, decisions about testing will no longer rest with patients or families, and geneticists will place themselves squarely in the middle of families who are trying to deal with their own genetic legacies.

Geneticists are currently amassing a plethora of tests and information that may be of critical interest to individuals and families who have a stake in planning their own lives with a knowledge of their own genetic endowment. What is now incumbent on geneticists, genetic counselors, physicians, and other medical professionals is careful evaluation of their roles and influences in the lives of their patients. This consideration includes an examination of the changing nature of the physician-patient relationship as more sophisticated methods are developed for detecting and coping with the spectrum of genetic diseases. Also included in the examination of the practice of contemporary medical genetics is careful comparison of the relative positions of parents, children, and medical professionals in the changing world of medical genetics and genetic counseling.

Commentary: "Genetic Testing in Children and Adolescents: Parental Authority, the Rights of Children, and Duties of Geneticists"

In taking on this challenging new area, Pelias and Blanton provide a thorough discussion of background questions and undertake the difficult task of interconnecting issues regarding parent-child relations, the interests of government and the privacy of the family, and the relationship of medical provider and health care consumer. The task is unmistakably daunting and I applaud their efforts. Moreover, as neither a trained attorney, nor geneticist, I will not comment on the legal technicalities they present. Rather, my critical remarks are made on the basis of my training and experience as both philosopher and policy analyst.

Recalling the earliest clinical opinion on the subject, namely that "no children should ever be tested for the gene that causes Huntington disease," Pelias and Blanton contend that what this opinion "fails to acknowledge, however, are the interests and obligations of parents, who are charged by society with providing for their children, and who may well justify their quest for learning their children's genotypes even if the gene . . . may not begin to work its damage until years later." By their analysis, they suggest that properly analyzing the complex issues that surround decisions about genetic testing requires a legal framework which defines the limits of parental authority, the rights of children, and provides the opportunity to balance potentially competing interests on the part of family members.

Two central themes emerge from their discussion of this legal framework: 1) the rights of parents versus children and adolescents vis-à-vis genetic testing, and 2) the proper role of professionals who will inevitably encounter intrafamilial conflict when they provide genetic counseling. They contend this framework should be used to formulate and specify the moral/legal duties of clinical geneticists and other professionals who provide genetic counseling in the delivery of genetic services. In other words, Pelias and Blanton attempt to clarify and resolve disputes about duties to provide due care and informed consent by using case law to define the fiduciary relationship between the genetic service provider and the providee. Once the nature of this fiduciary relationship can be generally defined with respect to the unique considerations inherent in clinical genetics, they believe that it can be applied to specific situations and that the "gravity of the disease" tested for is likely to drive the parameters of the decision and the outcome.

The crux of my commentary will be based on the following three issues: 1) the relevance of existing legal opinion to this discussion, 2) the nature of balancing tests intended to weigh competing interests and values or balance conflicting duties and rights, and 3) the principle of autonomy.

Intellectual Property at the Public-Private Divide: The Case of Large-Scale cDNA Sequencing

The Human Genome Project provides fertile ground for studying the role of intellectual property at the wavering boundary between public and private research science. It involves a major commitment of both public and private research funds in an area that is of significant interest both to research scientists working in university and government laboratories and to commercial firms. It thus provides a wealth of new scientific discoveries that are simultaneously potential candidates for commercial development and inputs into further research. Its obvious implications for human health raise the stakes of getting the balance between private property and public access right, particularly at a time when public attention is riveted upon the rising costs of health care. It profoundly affects the interests of the young biotechnology industry as well as the more established pharmaceutical industry, and thus offers an opportunity to compare the perspectives of two very different types of commercial firms. Moreover, intellectual property issues have been unusually conspicuous in the recent history of advances in the emerging field of "genomics," even by the standards of the patent-weary genetics and molecular biology communities.

Controversy has been particularly acute over intellectual property rights in the results of large-scale complementary DNA (CDNA) sequencing, a technique that focuses on the small fraction of the genome that cells "express" in the form of proteins. The Human Genome Project has as its ultimate goal the mapping and sequencing of the entire human genome. Yet only an estimated three to five percent of the human genome contains the code for proteins that cells make and use in performing their biological functions. Through the use of enzymes, it is possible to make copies of the coding regions within the genome that a cell is in the process of expressing, in effect creating a heavily redacted version of the genome that eliminates all of the "junk DNA." These redacted DNA sequences are called complementary DNA ("CDNA") sequences. Because CDNA sequences code for proteins that are used by human cells, this approach allows for the relatively expeditious identification of DNA sequences that are particularly likely to have medical, and perhaps commercial, significance.

It was somewhat controversial in the early years of the Human Genome Project whether it made sense to allocate funds to large-scale CDNA sequencing with existing resources and technology. One scientist who thought this approach promising was Dr. Craig Venter of the National Institute of Neurological Diseases and Stroke. Working with randomly selected CDNAS derived from human brain tissue, Dr. Venter and his colleagues used automated DNA sequencing machines to obtain a DNA sequence for a small portion of each CDNA. Each of these partial sequences, called an "expressed sequence tag" ("EST"), is long enough to supply a unique identification for the gene from which it derives, but short enough to permit rapid partial sequencing of a large number of genes. Any given EST can then be used as a probe to find its corresponding full-length CDNA for further study. A database of ESTS thus provides a catalogue of expressed genes that can serve as a useful resource in subsequent research to identify particular genes of interest and to study their biological functions.

Property Rights in cDNA Sequences: A New Resident for the Public Domain

Professor Rebecca Eisenberg has provided us with an exhaustive and useful account of the recent dispute over patent protection for large-scale complementary DNA ("CDNA") sequencing. Stripped to its essentials, the dispute arose as follows. Scientists at the National Institute of Neurological Diseases and Stroke developed the initial techniques for the discovery of CDNA sequences and the ability to isolate certain "expressed sequence tags" ("ESTs") within the CDNA sequences. These gene tags permit investigators to identify the larger active DNA strands of which they are a part and provide information that might be used to develop drugs and other end products that, if successful, could command a handsome return in the marketplace.

No one doubts, I think, that any novel processes used to isolate these gene tags are entitled to receive patent protection. But researchers also sought patent protection for the non-"junk DNA" tags themselves, even though their exact functions were not clearly established. In the end, these patent applications were rejected. Our post mortem, therefore, must consider the implications of this incident for future applications.

While I make no strong claim to expertise on patent law, I yield to no one in my enthusiasm for the institution of private property. Notwithstanding the latter and perhaps because of the former, I am puzzled as to why Professor Eisenberg hesitates to condemn these claims. I can hardly conceive of a weaker case for patent protection than this one. To outline the reasoning behind this conclusion, I shall divide my response into two parts. Part I gives a quick overview of the rules governing the acquisition of property rights both in things and inventions. Part II applies the principles behind property rights to the CDNA dispute.

"Intellectual Property at the Public-Private Divide:" A Response

Rebecca S. Eisenberg's scholarly article examines United States patent law's application to complementary DNA ("CDNA") sequencing, a unique new area of scientific technology that was certainly never envisioned by the authors of patent legislation. However, arguing in favor of DNA patenting seems somewhat akin to arguing from the constitutional right to bear arms to the right of homeowners to own cannons. Some would argue that the right to bear arms means that every red-blooded American has the right to protect his or her property through any means possible and the Constitution does not differentiate between rifles and cannons. Similarly, the Constitution is mute on the topic of DNA. As a result, some would argue that the same patent laws that were created to protect designers of plows and tonics can be easily applied to this new area of science.

As a "consumer" who is also a mother, a grandmother, a leader of a national voluntary health agency that is very involved with genetic diseases, and a member of the human race, I must express my concern about what I consider a moral and ethical outrage. No matter what a court of law would decide about the patentability of DNA, in my mind, there is a difference between a "discovery" and an "invention." Human beings did not invent DNA; therefore, there is no way any civilized society should allow human beings to patent it, especially before all of its uses are known. The law's unwillingness to address the unique concerns raised by genetic discoveries has brought humanity to a precipice of risk with unimaginable consequences only a step away. The cells of our progeny are being sold before they are even conceived.

The main patent controversy Eisenberg addresses involves CDNA sequencing. Companies and researchers are applying for patents on DNA sequences before all of their uses are known and certainly before any diagnostic or therapeutic application has been identified . . .

Genetic Confidentiality: What’s the Big Secret?

The explosion of information generated by the Human Genome Project and related advances in molecular biology come at a propitious time. Never before have Americans been so sensitive to their rights--real and imagined--in the realm of privacy, nor so aware of the potential for abuse of private information. As information that describes some of the most personal features of an individual's identity becomes available via genetic analysis--information linked to conditions that have been characterized as "immutable, heritable traits that intrinsically implicate the bearer's identity"--the chorus of support for legislation to prohibit genetic discrimination grows louder. Demands for restriction on the use of information derived from DNA testing have increased, and legal remedies are proposed to avoid the danger of creating a "genetic underclass," particularly vulnerable to the whimsy of health care insurance markets.

Yet in focusing on this newest kind of medical information, we often fail to realize that the potential misuse of genetic information is only another example of how other types of health-related information may be misused. We overlook the state of the law ostensibly written to protect medical information. Such law varies widely from state to state and contains numerous exceptions. We know relatively little about how effectively or how poorly that law protects the more prosaic brands of medical information – such as diagnostic history or family background reports – which themselves may provide ample basis upon which to found discriminatory decisions, particularly in regard to insurance coverage.

Straining to establish a new air-tight standard for uses of genetic data, we overlook the data readily available from blood and tissue samples regularly provided by medical patients, employees, candidates for insurance or the millions of people who flow through the military or our systems of criminal adjudication. Nor do we have a thorough understanding of the numerous well-established and legally sanctioned means to conduct DNA testing that already are in place. Before we push through specialized laws to protect genetic confidentiality we should also be asking: how easy is it to collect or access genetic information? And do we have an adequate understanding of existing legal provisions that purport to protect genetic privacy?

It is also worth asking whether too much is being made, in the academic as well as the popular literature, of the dangers inherent in the widespread availability of genetic information, and whether too little is made of the danger to individual privacy that exists in the face of a generally porous medical information system in which the traditional norm of confidentiality has all but deteriorated.

This Article is meant to provide some perspective on the recent attention to genetic privacy law. It includes a survey of current practices for collecting genetic data, and a compilation of existing state laws that attempt to regulate the use of genetic information to prevent insurance discrimination.

State insurance law is permeated with contradictory statutes that often fail to make the necessary distinctions between health, disability and life insurance. A hypothetical case is presented to demonstrate the shortcomings in those state laws, and to explain the use of arguments for genetic confidentiality as proxy arguments for the need for health care reform. I argue that however well-intentioned our attention to genetic confidentiality is, it will not cure the health care access crisis.

Finally, I wish to call attention to the "genephobic" rhetoric that is imbedded in several recent proposals for an overhaul of genetic privacy. The reductionism of some of the language being used by prominent commentators threatens to push public understanding of genetic conditions further toward an embrace of genetic determinism – to the detriment of those very people whose interests new law is meant to protect. The rhetoric of fear surrounding the impending revolution in genetic information may have the unintended consequence of further stigmatizing precisely those people whose genetic conditions mark them as vulnerable to discriminatory treatment.

Test Wars: Mandatory HIV Testing, Women, and Their Children

The governmental power to act in defense of the public's health is vast, and yet, when it comes to fighting diseases, there are precious few weapons in its arsenal. Principal among these weapons is the power to combat epidemics by undertaking search and destroy missions in the general population. In the past, these missions have entailed the identification and treatment (or, in the absence of effective treatment, isolation) of infected individuals. For those who adhere to the belief that the government should not refrain from exercising the full range of its police powers whenever the public's health is threatened, the official response to the HIV epidemic has seemed like an incomprehensibly long stall tactic.

Ever since the early 1980s, when HIV first was identified, there has been a persistent debate over the exercise of the traditional public health power to identify infected individuals by screening the population or by testing selected subgroups. In virtually every context, advocates of non-anonymous mandatory HIV testing have been opposed and defeated by a broad coalition of opponents. In recent years, however, that coalition has begun to fray, and as a result, the debates over mandatory testing have intensified. The fragmentation of the anti-testing coalition has been precipitated by issues relating to the prenatal transmission of HIV. In particular, the 1994 discovery that HIV-infected pregnant women who take azidovudine ("AZT") are less likely to transmit the virus to their offspring, has led to widespread efforts to institute the mandatory HIV testing of pregnant women.

This Article seeks to situate the debates over mandatory testing in the broader context of public health policy by evaluating the underlying factual and policy assumptions that have informed both sides of the debate throughout the epidemic. This analysis elucidates clear, if unexpected, answers to the challenges posed by those who claim that the possibility of preventing HIV infection in fetuses ought to alter the consensus against mandatory HIV testing with respect to pregnant women. It also casts considerable doubt upon the legitimacy, if not the legality, of the broadly construed police power to compel individual compliance in the name of the public's health.