Homosexuality and the Human Genome Project: Private and Public Choices

Donald L Gabard. Journal of Homosexuality. Volume 37, Issue 1. 1999.

Introduction

The Human Genome Project is an international endeavor that was officially initiated in 1990. It is estimated that it will take at least 15 years and three billion dollars to complete (Whittaker, 1992) and some express confidence that the project will be completed by the projected year of 2005 (Lander, 1996). The goal is to develop maps that will identify the location of the 60,000 to 70,000 genes (Fields, Adams, White & Venter, 1994) that are the hereditary units of human chromosomes as well as maps of several other organisms (Privacy Commission of Canada, 1992). A large portion of the value of the project rests on the expansion of our basic understanding of biological life in general and the explicit promise of the relief of suffering from the more than 4,000 genetic diseases either through prevention or cure (Green & Waterston, 1991). Presently, genetic information can be used to predict genetic diseases, such as Huntington’s disease, but only rarely does it affect the course of the disease. Current technology is utilized to screen the fetus for a few chromosomal defects, thus allowing abortion as an option. Recently treatment was implemented and success reported with six patients using somatic cell therapy techniques for cystic fibrosis (Schatz & Pavirani, 1995). The Food and Drug Administration recently gave approval for clinical trials to begin with Gaucher disease using gene therapy (Ohashi, 1995). Other treatment protocols are currently underway, and gene therapy appears promising in its usefulness as a medical treatment. Crystal (1995) reports that there have been few problems with the actual genetic material being transferred and that most of the problems so far have been in the delivery strategies.

In the future, there are three theoretical strategies for preventing genetic disorders (Zimmerman, 1991). First, there is the capability to screen and select early-stage embryos before implantation. Embryos that are found unacceptable would be discarded. Second, somatic cell therapy performed on the embryo could be used for gene replacement. Somatic cell gene therapy refers to the correction of a genetic defect in the cells of the patient excluding germline or reproductive cells. Third, the germ cells, or reproductive cells, could be screened and corrected before conception. In germline therapy, correction is achieved for all future generations but is a highly problematic approach and not foreseeable at the present time.

The new knowledge already acquired through the project has increased our appreciation of the enormous complexities of the subject. One of the discoveries is that there is extreme variability of effect in inherited genetic alterations. For example, in one form of colon cancer investigated by researchers at Johns Hopkins University, all of the people with the newly identified genetic mutation developed cancer of the colon, regardless of what other factors had occurred in their lives (Begley, 1993). At the other end of the spectrum, there are genes with such low penetrance that only some of the people who inherit the genes will ever experience the disease (Council on Ethical and Judicial Affairs, 1991). Frequently, even when the gene is expressive, it does so in a variable manner so that the effects may differ greatly from person to person. A new term has arisen called ‘‘contingency genes,’’ which refers to genes that result in a disease process only if some genetic or environmental cofactor acts as a catalyst (Nolan & Swenson, 1988). A new field of study has emerged called ‘‘ecogenetics,’’ through which scientists are attempting to correlate environmental factors with gene expression (Begley, 1993).

Historically one of the most fervently debated issues has been the actual importance of genetic inheritance and the effect of the environment, especially in behavioral issues. In a recent study of over 100 sets of twins or triplets reared apart and followed since 1979, the conclusion was that genetic factors had a profound and pervasive influence on behavior (Bouchard, Lykken, McGue, Segal & Tellegen, 1990). For almost every behavioral characteristic analyzed thus far, from religiosity to reaction time, genetics appears to have played an important role (Bouchard et al., 1990) including cognitive ability (Plomin & Thompson, 1993). Other studies of twins have pointed out that environment has a major influence on individuals (Annas & Elias, 1992). A growing number of scientists are expressing the belief that in all likelihood most behavioral traits are governed by an interactive model of environment and genetics. Regardless of the eventual outcome of this debate, possibly the most relevant point in the nurture vs. nature argument, especially from an ethical perspective, is that during the formative years when personality and values are established, both nature and nurture are beyond the control of the child (Greenspan, 1992).

Genetic Mapping and Homosexuality

Perhaps one of the most controversial fields of investigation in recent years has been in the area of sexual orientation. Nearly 50 years of psychiatric research have established that homosexuality is not voluntarily amenable to change (Burr, 1993). For many years the leading theories argued that environmental factors were the primary, even exclusive, origin of homosexuality. Many other approaches, including theories on hormonal causation, have produced no objective proof of causality (Byne & Parsons, 1993). Studies on both monozygotic and dizygotic twins and on other siblings have produced some of the most frequently cited results. Bailey and Pillard (1991), using a sample of 56 pairs of identical twins, 54 pairs of fraternal twins, 142 nontwin brothers of the twins, and 57 pairs of brothers who were adopted, found that the concordance rate for homosexuality among the identical twins of the initially identified homosexual twins was 52%, among fraternal twins it was 22%, between non-twin biological brothers it was 9.2%, and for adopted brothers it was 11%. These findings were similar to those found for women in that the concordance rate of female homosexuality among monozygotic twins was 38%, dizygotic was 15%, and adoptive sisters was 3% (Bailey, Pillard, Neale & Agyei, 1993). In support of a familial or genetic link to homosexuality, one of the more recent studies by Hamer et al. has narrowed at least one of the genetic points for one form of male homosexuality to the chromosomal region Xp28 (Hamer, Hu, Magnuson, Hu & Pattatucci, 1993). This research is not without controversy and there have been no successful replications reported thus far.

Virtually none of the research projects dealing with a genetic basis for sexual orientation are without serious design or methodological deficits and as a consequence their findings remain tentative and speculative (McGuire, 1995). Although the circumstantial case for genetic involvement is persuasive, environmental factors must be significant as witnessed by the fact that even though fraternal twins are no more biologically similar than non-twin biological brothers, the concordance rate of homosexuality among fraternal twins in the Bailey and Pillard study is twice that for non-twin brothers (Hubbard & Wald, 1993). With current estimates of the rate of male homosexuality being between two (Billy, Tanfer, Grady & Klepinger, 1993) and five (Davis & Smith, 1991) percent, it is important to note that families with one homosexual child were between two and five times more likely to have an adoptive child who was homosexual. From this perspective the Bailey and Pillard study is an effective argument for the role of environment in homosexuality. In the Hamer et al. study, it should be noted that not all sets of homosexual brothers shared the identified genetic marker, thus leaving open other areas of the genome or other causal factors including environment, culture, and experience (Hamer et al., 1993). Even in the Bailey and Pillard study, it should be noted that though 52% of identical twins who were homosexual had homosexual twin brothers, 48% did not have twin brothers with the same sexual orientation. At face value the most obvious conclusion from this study is that both genetics and environment appear to have the potential to influence sexual orientation. Byne and Parsons (1993) have proposed an interactional model for sexual orientation that designates genetics as an influencer of personality traits that in turn affect the way a person molds the environment as sexual orientation unfolds in a developmental fashion. The Bailey and Pillard model takes a multifactorial approach which leads to multiple pathways to arrive at a homosexual orientation which is itself a continuum (Burr, 1993).

In addition to proposed genetic causes of homosexuality, there have been biological models offered but Anne Fausto-Sterling (1985) reasons that the search for biological causes for behaviors is futile due to the facts that a single behavior may have many causes and even though biology may affect behavior, behaviors in turn have the ability to alter one’s physiology. Ruth Hubbard (1990) offers the observation that the social prescription of sex-appropriate behaviors and activities has an effect on virtually all body systems. Basic research efforts in support of this position include the works of Turner and Greenough (1985) and Bhide and Bedi (1984) among others. The mounting evidence that experience can change not only the physiology but also the structure of the brain has prompted Byne and Parsons (1993) to state that the term ‘biologic’ is now itself ambiguous. In view of this observation, Simon LeVay’s research which reported to find structural differences in portions of the brains of homosexual and heterosexual men (LeVay, 1991) does not establish whether possible brain differences are the result of genetically induced differences or behavior induced biological changes. Even though the study gained much publicity, there were profound methodological problems such as the absence of sexual histories and the presence of confounding variables such as AIDS and drug usage (Byne & Parsons, 1993). In addition, there were major flaws in unsupported assumptions such as deductions of male homosexual motivation in male animals not given the opportunity to interact with other males (Byne, 1995), equating frequency of sexual behavior with sexual orientation, selection of brain site supported by research conducted only on heterosexual monkeys and numerous other problems reported by Fausto-Sterling (1992). Other researchers, such as Allen and Gorski (1992) and Swaab and Hofman (1990) have also found differences in brain structures between homosexual men and heterosexual men and women. Both of these studies are subject to some of the same criticism. It should be noted, however, that unlike previous studies, Allen and Gorski argue for a global rather than specific brain area difference.

Both the current behavioral and biological research appear to be primarily grounded in the ‘‘essentialists’’ paradigm (Duberman, Vicinus & Chauncey, 1989). Briefly, the essentialists argue that there has always been a separate homosexual identity and that history is a reflection of changing social reactions to that identity. The constructionists contend that a separate homosexual identity is a relatively recent social construction and that prior to that time the entire array of sexual expression and emotional engagements were the norm. At the present time many of both the essentialists and constructionists agree with the concept of biological and cultural interactions but with differing rank and priority (De Cecco & Elia, 1993). However, if the social constructionist paradigm were shared by researchers, the research questions would probably change to questions about the unity of human sexuality such as sexual attraction and emotional bonding. Instead the focus is on sexual orientation (homosexuality vs. heterosexuality) as two mutually exclusive ways of experiencing life without regard for grading of either orientation or the existence of bisexuality. Equally neglected are the transitions that occur over a lifetime ‘‘… as if life, like digital technology, were indisputably binary: gay or straight, male or female, immature or mature, child or adult. How many people, looking at themselves and the course of their lives, see only one or the other?’’ (Garber, 1995, p. 324).

Concerns

The prospects of genetic differences relative to sexual orientation have given rise to at least two different responses. Goldsmith states: ‘‘Whether or not their position is well reasoned, various activists gay political groups are reportedly strongly invested in portraying homosexuality as biological or genetic–the distinction is often not respected. The notion is that biological roots legitimize homosexual orientation as ‘natural’ and thus buttress legal arguments to extend the same civil protection to sexual orientation as currently afforded race, religion, national origin, and physical disability…’’ (Goldsmith, 1993, pp. 336-7). Goldsmith (1993, pp. 337) goes on to ask: ‘‘Does believing that unattractive people are unattractive chiefly through the luck of their parentage rather than through experience affect the way society regards these persons?’’ Most people are aware that the immutability of genetic skin color (race) and sex have not eliminated racism or sexism. In fact it appears that the more immutable the trait, the more rigid the public response. Yet, evidence that a quality is not under the control of the individual does weaken the justification for differential treatment in regard to civil rights. We may not find unattractive people more attractive knowing that those qualities are genetic, but we have no justification for the denial of equal legal and citizenship rights based simply on our like or dislike of others. In general, under the principle of Justice, we agree that we should not hold people responsible for those qualities that are not under their control such as race, sex, national origin, and physical disability and, therefore, must allow full participation in all areas of citizenship.

De Cecco and Elia (1993) also object to the strategy of a ‘‘biologization of homosexuality’’ to battle homophobia but for somewhat different reasons. They reason that the ‘‘biologization’’ reinforces the concept of a dichotomous heterosexual-homosexual existence. As a consequence, a dichotomous heterosexual-homosexual construct limits our social participation, our freedom to change sexual preference as many people do in a lifetime, and to experience bisexuality. They speculate that an increased dichotomous construct would force people to choose sides and as a consequence create a power differential so great that abuses of power, both politically and medically, would adversely affect decisions about screening and somatic cell therapy for homosexuality. The objections expressed by De Cecco and Elia rest on the assumption that power rather than justice will prevail and will express itself to limit or eliminate the less powerful. There is a significant historical base to support these assumptions. However, the power differential may be overestimated if other minorities that have not to this point in time supported Gay and Lesbian civil rights efforts perceive a biological cause as a commonality adequate to warrant support for civil rights. It is also possible, given the extremely high value of autonomy in this country (Bellah, 1986; Beauchamp & Childress, 1994), that the majority may act in defense of the principle of autonomy from a self-interest perspective. The perception of an autonomy versus government or medical conflict rather than a homosexual versus heterosexual conflict could drastically alter the effect of the power differential.

There are others in the Gay and Lesbian communities that feel threatened by the genetic research and would support the suspension of these efforts at this time. It is the pragmatic assumption of this paper that research and entrepreneurial use of genetic information will continue to develop due at least in part to future market demands and the scientific insistence on information for its own sake. Their fears are based not so much in the scientific information but rather how that information may be used. Michelle Stanworth (1987, in p. 32) addresses many of these concerns, among them ‘‘…is the worry that the definition of ‘unfit’ will become a mask for prejudice and intolerance … that attempts to reduce genetic variability will be substituted for efforts to create an environment in which the range of human variability can flourish.’’ An additional concern exists that the focus on genetic research does little to increase the public’s understanding of homosexuality. A preoccupation with the ‘‘origin’’ of homosexuality detracts from the behavior research which refutes misconceptions and misinformation and increases our understanding. The fear is that if the perception of homosexuality is reduced to ‘‘simple’’ genetics, this oversimplification will act as a cement to create an amalgamation of myths and misinformation even less amenable to change. At worst some members of the Gay and Lesbian communities fear sophisticated new forms of negative eugenics. This distrust has significant historical foundations in three areas.

First, there is a distrust of the scientific community. Scientists come from the general community and as such take with them the biases and prejudices of that community. It was not such a long time ago that scientists agreed that since women had smaller brains than men, they should not be allowed the same education and that since educated women had fewer children, education must somehow adversely affect their reproductive abilities (Hubbard & Wald, 1993). Over half the physicians, 60% of biologists, and nearly 80% of geneticists joined the Nazi Party in Germany (Annas & Elias, 1992). Homosexuals were among the first to be tortured and murdered in what became the Holocaust (Grau, 1995; Plant, 1986). But even if there are greater safeguards in the scientific community than before, the most powerful bias of all goes unchecked, and that is simply the decision on which research questions are worthy of investigation. While the scientific process offers some safeguards on findings, it offers no protection in the questions asked or the interpretation given to the findings. Byne and Parsons (1993) note that in the biologically deterministic literature such terms as ‘‘failure,’’ ‘‘abnormality,’’ ‘‘defect’’ or ‘‘aberration’’ are expressed in reference to homosexuality. If the paradigm of homosexuality is defined in terms of dysfunction, when innovative research is attempted it will be ignored, since as Hubbard (1990) notes, the scientific facts must fit the paradigm of the time.

Second, there has been a long history of distrust in the medical professions in its treatment of homosexuality. Since the ‘‘medicalization of homosexuality,’’ there have been profoundly inhumane treatments devised by the medical community in an effort to ‘‘cure’’ homosexuality (Greenberg, 1988). Historically every theory, regardless of how speculative or unproven the assumptions, used to explain homosexuality has been translated into an attempt to cure or prevent homosexuality (Byne & Parsons, 1993; Hern, 1995; Schmidt, 1984). Perhaps the most concentrated efforts to eliminate homosexuality under the rubric of medicine occurred just prior to and during the Holocaust. Castration (Giles, 1992), castration with implantation of heterosexual testes (Schmidt, 1984) and attempted hormone manipulation through implanted synthetic hormones (Haeverle, 1990) were examples of experiments that were implemented without success on homosexual men in pre-Nazi and Nazi Germany. Medical experimentation took on such demonic proportions that Nazi officials were forced to limit ‘‘overzealous physicians’’ (Proctor, 1992). More recently, based on the theory that destruction of part of the hypothalamus could cure homosexuality, more than 30 homosexuals received brain surgery between 1962 and 1979 (Schmidt, 1984; Stereotaxic, 1974). Gunter Dorner, a researcher who has spent most of his professional life seeking to refine the prenatal hormonal theory, states directly that the purpose of his work is to allow pregnant women to prevent homosexuality in their families (Schmidt, 1984). More recently, however, in the treatment of persons with AIDS, who initially were predominately homosexual men, the refusal by medical persons to serve this patient population was significant enough to require enforcement under the Americans with Disability Act of 1992. Discrimination and inferior care by medical personnel have a long history in the AIDS epidemic (Chaimowitz, 1991; Douglas, Kalman & Kalman, 1985; Morin & Batchelor, 1984; Young, 1988; Wilkerson, 1994). Early in the AIDS epidemic, it was assumed that reluctance to treat was almost exclusively predicted by fear of contagion. More recent research has found that one of the best, if not the single best predictor of unwillingness to serve is homophobia (Scherer, Wu & Haughey, 1991; Dupras, Levy, Samson & Tessier, 1989; Hayward & Wesisfeld, 1993; Martindale & Barnett, 1992). Using a standardized test of homophobia, 36% of family practice residents and 33% of psychiatric residents were determined to be homophobic (Chaimowitz, 1991). Among third-year residents in a national survey (n = 2,917), 20% of the physicians stated that they were uncomfortable being around someone who was homosexual (Hayward & Weisisfeld, 1993). Other health professionals have scored even higher (38%) on scales of homophobia in the moderate to high levels (Scherer, Wu & Haughey, 1991). Homophobia among nurses, regardless of the illness being treated, resulted in compromises affecting the quality and quantity of care (Kelly, St. Lawrence, Hood, Smith & Cook, 1988).

A third foundation for fear is a distrust of the public’s use of the technological advances in screening for genetic conditions. When it became possible to determine gender before birth, that information was used internationally as the determinant for abortion. Between 1978 and 1982 in Bombay alone, between 8,000 and 10,000 female fetuses were aborted because of gender (Wertz & Fletcher, 1989). In a recent study of geneticists throughout the world, it was discovered that geneticists in the U.S. go to greater extremes than professionals in any other country to honor patient requests. Of geneticists in the U.S., 62% would either screen a fetus or refer for screening for the purpose of gender selection (Wertz & Fletcher, 1989). In another study the public responded that 58% would abort for diagnosed mental retardation and 12% would abort for untreatable obesity (Wertz, 1992). One could speculate that, given the option, the rate of abortion for homosexuality would be high. The fact that it is extremely unlikely that there is a simple genetic cause for homosexuality will be a persuasive argument for a portion of the population to neither screen nor demand genetic therapy. There is another portion of the population, however, whose fears and hatred of homosexuality are not based in logic and may create a market for tests or therapies that can only promise to reduce the likelihood. Historically in a capitalistic society products are generated to meet economic demands even if those demands harm the individual (tobacco) or others in society (guns). It is entirely possible that screening tests and somatic cell therapy may become available even without proven efficacy. Two of the specific concerns are as follows:

Screening tests will be marketed in home kits so prospective mothers and fathers can screen the fetus for homosexual factors. Parents may then abort on will or, if opposed to abortion, attempt to alter the child’s sexual orientation. These screening kits may be promoted with advertising and provided free by those advocating a ‘‘duty’’ to bring only ‘‘morally’’ healthy children into the world.
If sexual orientation became a choice, government, which has the legitimate task of limiting choices, will be empowered to limit or rescind rights.

Screening Tests

Screening of the fetus for several serious genetic diseases is currently a reality. Even in states where abortion is seriously limited, genetic disabilities usually are exempted from legal abortion restrictions. Perhaps one of the oldest genetic tests for prenatal screening is for Trisomy 21 and it is one that is nearly routine in high risk situations. Genetic screening tests will probably be the first application of genome research since, as Hubbard (1990) points out, it is more profitable for pharmaceutical companies to market screening tests than to develop intervention measures since there is a much more limited market for intervention. The likelihood of an array of screening tests is enhanced by the current practice of full disclosure of genetic sequencing to the public domain through the World Wide Web (Schuler et al., 1996). Bentley (1996) reports that the participants of the International Strategy Meeting on Human Genome Sequencing conducted in 1996 unanimously supported full public disclosure. ‘‘The major aim is to promote maximum accessibility of the human genome sequence for interpretation and exploitation. These activities should flourish in both the academic and commercial sectors’’ (Bentley, 1996, p. 533). The immediate release of genome data is partially justified by increasing the competition to develop diagnostic tests and intervention agents (Bentley, 1996). This appears to have already occurred with the announcement that Myriad Genetic Laboratories will soon market a commercial test to detect two genes (BRCA1 and BRCA2) that are believed to be factors in approximately 66% of the five to ten percent of women who develop breast cancer as a result of identified genetic material (Kahn, 1996). As Lander notes, ‘‘As genetic readouts increase in power and decrease in cost, the potential for intrusive applications will skyrocket’’ (Lander, 1996, p. 538).

Ethically, the problems inherent in genetic screening with the intent to abort the fetus center on arguments that pit the mother’s right to choice against the fetus’s ‘‘right to life.’’ At the current time most of the legal and ethical arguments and public support appear to hold that the mother’s rights of choice supersede the rights of the fetus, if in fact those fetal rights exist. Some of the dilemma is reduced with a proposed screening of embryos before implantation. In this case there is no somatic or germline manipulation of genetic properties, but rather the embryos are screened and those found unacceptable are discarded and those with the highest desired qualities are retained and implanted in the mother. Ethical arguments have favored screening tests under the assumption that these tests would exist for severe genetic diseases. In that context, there are many ethical advantages to this procedure as opposed to more invasive fetal procedures that might involve prenatal diagnosis and abortion or genetic engineering. The arguments are offered that, based on the parents’ autonomy, beneficence, and non-maleficence, parents have a right to avoid offspring with severe genetic disabilities. We could probably find much agreement for this position; however, the problems arise when selection is based on social or cultural values that are less compelling such as gender selection, hair color, or sexual orientation. Does the parental right extend throughout the entire spectrum of qualities that a human may genetically inherit?

Although we can, and should, map an ethical and policy framework, we need also to be aware of the reality of compliance. Regardless of reason, the state cannot interfere in the private decision made by the mother and the physician in the disposition of the fetus according to Roe v. Wade (Annas & Elias, 1992). There is no qualifier that prohibits the consideration of medical or social reasons for the continuation of a pregnancy. Even if reasons were required, maternal anxiety may be all the reason that is needed. In India, when genetic testing for gender selection was made illegal, the method simply switched to ultrasound that was not prohibited (Wertz, 1992). Ultrasound was later prohibited for this use but the prohibition is virtually unenforceable. Many doctors in the region reported they would rather abort the female fetus than witness female infanticide or a lifetime of mistreatment. There seems to be a consensus that laws to prohibit gender selection would be impossible to enforce since most could invent another reason for abortion. Restrictions on abortion are far less likely than expanded options. With expanded rights on conception and termination have come, by nature, expanded duties. Now that women have legitimate choices in carrying a child through pregnancy, the social milieu has increased its expectations of duties to be performed. A woman is more than ever expected to avoid risks that might affect the fetus and to care for herself more carefully than ever before, giving up habits and indulgences that she can resume once the baby is born. The increased responsibilities have not been limited to prenatal care, however. Mothers are now seen as responsible, and often solely responsible, for the social, psychological, intellectual, emotional and physical well-being of the child (Stanworth, 1987). With these added responsibilities, it is not difficult to imagine that the list of duties will continue to expand and it will be commonly expected that a potential mother will seek prenatal screening, and the expectations will be that she will make socially appropriate choices (Hubbard & Wald, 1993). Mothers may be expected to simply eliminate disabilities of all types simply by not giving birth to children who are ‘‘defective’’ (Hubbard, 1990). There is also the trend, reported by Hubbard (1990), that in the future the mother’s autonomy may be balanced with the opinion that the fetus that is destined to be born has status as a patient and as such has a legal right to medical treatment. According to Hubbard, some legal scholars are expressing the opinion that while a woman retains the right to abortion, if she elects to carry the child to birth, she may not have the right to refuse prenatal diagnosis or treatment. If somatic cell therapy becomes available, this may serve to alleviate the dilemma that many opposed to abortion but also opposed to homosexuality experience. If it does not become available and abortion is rejected, one must consider the potential ‘‘reprogramming’’ efforts that will be developed and the harmful long-term consequences to both the individual and society.

Although costs have negatively impacted the screening for cystic fibrosis and other genetic-based diseases, the financial ability of groups opposed to homosexuality to subsidize testing is not unimaginable. Given the tenor of prejudice in many communities in this country, it is hard to imagine some mothers electing to carry to term a fetus with predisposing factors for homosexuality. Holmes and Hoskins (1987), as well as Corea (1985) among others, have effectively argued that it is extremely difficult, given the current social paradigm, for a woman to make choices contrary to that paradigm. Although women have expanded choices made possible by modern technology, such as knowledge of the sex of the fetus, these choices do not translate into expanded actual autonomy for women. True autonomy is non-coerced and yet, as social pressures escalate to make ‘‘appropriate choices,’’ women have expanded duties without expanded autonomy. Aside from the covert paternalism of social pressure, there is evidence of a growing overt coercion which requires women to agree to terminate any abnormal fetus before amniocentesis will be performed (Rose, 1987). With efforts to contain costs in health care in the United States, efforts to restrict expenditures that do not result in direct cost savings can be expected to escalate.

The choice of abortion is itself not an un-coerced choice. The social pressures exerted on women by persons opposed to abortion are significant and have been described as resulting in ‘‘…an unsupportive and often hostile social and political atmosphere characterized by antiabortion harassment, lack of providers and lack of financial assistance’’ (Castle & Coeytaux, 1994, p. 158). These social pressures, at least in part, account for an abortion ratio in 1992 (335 per 1,000 livebirths) that was the lowest recorded since abortion was legalized in 1977 (Koonin, Smith, Ramick & Green, 1992). That ratio, however, must be reviewed in light of the fact that there were only 2,380 hospital-clinic and physicians’ offices combined in 1992 that offered abortion services in the United States (Henshaw & Van Vort, 1994). There has been an 18% decline between 1988 and 1992 in the number of sites offering abortion services which has also resulted in a concentration of available sites. Throughout the United States, most counties (84%) have no abortion provider and in nonmetropolitan areas 94% of the counties have no facilities to provide abortion services (Henshaw, Van Vort, 1994). Even among metropolitan areas, 33% have no providers or no provider serving at least 50 women per year (Henshaw, Van Vort, 1994). The FDA approval of RU486 and prostaglandin and other chemical abortifacients may have a significant impact on the number of elective abortions by virtue of increased availability, privacy, potentially reduced financial costs, and a reduction in medical risks (Castle & Coeytaux, 1994; Dipierri, 1994; Donaldson, Briggs & McMaster, 1994). These advantages to RU486 have led some women to feel differently about the abortion process and in one study described the abortion with RU486 as ‘‘premeditated miscarriage” (Berer, 1992). It is reported that some anti-abortion groups view RU486 as having the potential to undermine the anti-abortion campaign (Muhl, 1993). Given that abortion may become more readily available and with greater privacy, if screening tests for homosexuality become available, it may be ethical to restrict access to the test contingent on counseling prior to testing. This counseling could include a component on child rearing practices to facilitate a Gay or Lesbian child reaching their full potential in the community. Ethically one can defend this position as mildly paternalistic based in the intent to allow a more autonomous choice made possible through a recognition of options that may not be known or appreciated. It has been suggested that professional codes could discourage or even be used to discipline physicians who comply with requests for abortion for ‘‘trivial’’ reasons. One must wonder who would report the crime. Certainly it would not be reported by the requester and certainly not by the physician. If we lack realistic methods of controlling abortion for gender selection, one can only imagine the difficulty at limiting abortions for socially more marginal areas such as sexual orientation.

Somatic Cell Intervention

At the current level of understanding of homosexuality and even the level of correction possible with somatic cell therapy, it is questionable that somatic cell intervention would be successful if sexual orientation is established through neural pathways that may be established very early in fetal development. If, however homosexuality is biochemically facilitated, there may be avenues available for somatic cell therapy to alter sexual orientation. However, since so little is known, the possibility of correction must, from an ethical perspective, at least be addressed. Somatic cell therapy for catastrophic illnesses is not unlike other medical procedures and is supported by the principle of Beneficence (Nolan, 1991). The patient must give his/her informed consent and the changes that occur must relate only to the treated person and are not believed to be transmissible to future generations. Ethical problems arise with somatic cell therapy as the questions of definitions again emerge. What is a serious disease or how do we define ‘‘abnormal’’? Will we make the technology available to homosexuals who find their sexual orientation uncomfortable or disadvantageous, so that they can undergo treatment as transsexuals are currently allowed to do? If we follow this model, we would be well advised to note the conditions usually imposed on transsexuals. First, a person seeking to change sexual identity must be an adult. In this country, psychosocial maturity with the ability to formulate ‘‘…proactive direction and meaning to life may not occur until the mid-twenties or later…’’ (Schuster, Cronk & Reno, 1992, p. 533). Second, as with any medical intervention but especially where risks are considerable, respect for the principle of autonomy requires that the decision not be forced by another but the result of a carefully considered opinion. In a heterosexist and homophobic society, will the availability of choice become socially coercive so that all who do not seek change will be regarded not only as defective but as foolish? Since at this time heterosexism and homophobia are systemic in society, it appears that a coercion-free judgment is not possible. If public values change in the future and neither homophobia nor heterosexism is a major value in society, then it would appear that the choice should be offered to competent psychosocially mature adults.

Somatic cell therapy takes on a different meaning when we approach intervention in utero or in the young child. As with germline therapy, the concerns and arguments veer into virtually uncharted waters. One of the most persuasive arguments to implement both somatic cell and germline therapy is the ‘‘rescue’’ metaphor. Henry Sidgwich defined the parent-child relationship as a special contract of Beneficence (Rosenkranz, 1987). The duties of a parent in this permanent relationship, not chosen by the child and therefore the vulnerable partner in the relationship, include the duty to rescue the child from harm and to provide a loving relationship. Legal recognition has been enacted in some states through child endangerment laws, and some have punished parents for not rescuing their child from harm. The extension of this is that parents have a duty to do all possible to provide for the safety and wellbeing of the child, including the elimination of genetic material that may cause harm or even discomfort. In a more tolerant society this information could provide the opportunity to prepare the most advantageous environment for the child and family.

Researcher Responsibilities

Serious questions have arisen about the ethical responsibility of the researchers themselves, especially in the Human Genome Project, but perhaps most dramatically demonstrated in the release of information concerning U.S. covert nuclear testing (Watson, Glick, Hosenball, McCormick, Murr, Begley, Miller, Carroll & Keene-Osborn, 1993). At the beginning of the scientific paradigm there was the consensus that knowledge was morally neutral. Data could be used for good or evil and so the burden of right action was on the user of the information, not the generator of the knowledge. Since then, however, researchers have witnessed a history of abuse of information that simply cannot be ignored (Callahan, 1976). Our collective history now forewarns us that horrible consequences may evolve from scientific findings. Callahan introduced the Imagination Principle in which he claims that researchers have a responsibility to imagine the evil as well as the good ways in which findings might be used and to subject those findings to the following actions (Callahan, 1976):

If the outcomes are likely to produce more evil than good, as one might encounter in some biological warfare research, then the researcher should withdraw and actively seek to have the research stopped by all.
If the outcomes are a mix of good and evil, then the researcher should try to structure the research so that the greatest possible positive benefits are derived. It is equally the responsibility of the researcher to seek those strategies that assure that the harmful effects are minimized.
If the research will produce as much bad as good, then the research should not be continued.

If the researcher cannot assess the factors individually with complete confidence, then the imagined consequences should be shared with colleagues and with still larger professional groups if clear consensus does not emerge. In the event that even a large professional group cannot agree, then the fears and concerns should be taken to the public for a final decision on whether to proceed with the research (Callahan, 1976). Some believe that this is the process in which we are engaged and that on issues of sexual orientation the question of whether or not to proceed is a viable question and worthy of debate, especially if it diminishes the funding and efforts in areas of clear social need. Those debates must include government agencies that through the granting process now essentially control the direction of research in this country and have a fiduciary role in science and especially in health. We must be aware, however, that this process would not necessarily impact the private-sector researcher or entrepreneur.

A well-established researcher responsibility expressed in the Nuremberg Code and The World Medical Association Declaration of Helsinki is the value of autonomy and the resultant duty of full disclosure by the researcher of the hazards and benefits that can be anticipated. It is suggested that respect for autonomy extends to all those who will use the research findings personally or professionally and that there is a duty to expose the risk of bias. Although objectivity is one of the central tenets of scientific research, researchers bring with them the social opinions and prejudices that shape the research questions, interpret the findings, and dismiss contradictory information even in their own work. In the interest of full disclosure, there should be a statement by the researchers that discloses their personal biases about the subject matter under investigation. The reader is then alerted to the types of biases that may be present, consciously or unconsciously, in the work and can then be appropriately cautious in using the results. This is not an expectation that researchers abandon their right to privacy about their personal lives but rather a truthful expression of their opinions about the subject matter. In addition, it is equally important to review the research findings with other works in the area so that a partial truth is not perceived as the entire truth. As in any research effort, but especially where the potential for harm exists, it is critical that underlying assumptions be defined and clarified. Examples of general assumptions unsubstantiated but critical in scientific research interpretation of homosexuality include:

Homosexuality is a discrete entity rather than part of a continuum as has been represented by Kinsey and others (Fausto-Sterling, 1992).
Bisexuality is a form of homosexuality and not a discrete entity even though research has shown bisexuality is unique and substantially different from both homosexuality and heterosexuality (Van Wyk & Geist, 1995).
Homosexuality is an intermediate which expresses both masculine and feminine characteristics (Byne & Parsons, 1993). Male homosexuals are assumed to be feminized and female homosexuals are assumed to be masculinized when in fact this expression of inversion theory appears to be an unsupported social construction (De Cecco & Elia, 1993).
Animal research on non-primates can be generalizable to humans. The definitions of homosexual behavior in non-primate animals is often defined not by preference or affectional bonds but by inversion of sexual behavior without regard for the sex of the other animal (Haumann, 1995). Without the cognitive and emotional elements, such generalizations are extremely tenuous (Adkins-Regan, 1988; Meyer-Bahlburg, 1984).
Control of disease variables such as AIDS in human subjects when comparing homosexual with heterosexual brain tissue is irrelevant or unnecessary and that unless identified as homosexual, all other subjects are heterosexual.

General Policy Models

Other countries have already approached questions raised by the Genome Project and have expended great effort to produce what could be exemplary models for the U.S. In Canada, the Privacy Commission has published a large document of model policies for protection in most areas (McCarrick, 1993). At its foundation it offers protection in two areas. First, it offers strict control to individual citizens over genetic information so that intrusion from others is prevented. Second, it protects the person from his/her own secrets. Not only is the information safe from others, the right to not know and to not be tested is also assured. The French have narrowed the protection to the point where the physician is prohibited from giving the information to anyone, including patients themselves unless they specifically request it (Hubbard & Wald, 1993).

In the U.S., a bill was introduced in the state of New York that said that genetic information was owned exclusively by the person it pertained to and the bill forbad the release of that information to insurance companies, employers or potential employers (McEwen & Reilly, 1992). The one exception was the permissibility of disclosure to law enforcement. The Human Genome Program itself has recommended a policy that permits individuals to access their own information and prohibits disclosure to others without written authorization. There are, however, multiple exceptions in this model, one of which allows law enforcement to relay genetic information to physicians without the patient’s consent (McEwen & Reilly, 1992). The NIH workshop on population screening has proposed several components for model health policies that include the following (Annas & Elias, 1992):

The screening must always be voluntary and the results maintained in absolute confidentiality.
Informed consents must be required.
Counseling and education components must be present to help individuals interpret and understand the results.
Laboratory testing must be rigidly controlled for accuracy.
Equal access to the services must be assured to all prospective parents.

The U.S. Department of Defense announced in 1992 the intention to establish a repository of genetic information on all service members, ostensibly to aid in identifying casualties in war (Hubbard & Wald, 1993). Given the military’s predisposition to exclude homosexuals from the service, concern appears justified on how the genetic information will be used. So far, however, none of the policy models has addressed concerns which would limit the principle of autonomy in favor of a principle of justice. It is more likely that government will be the biggest threat to Gays and Lesbians not by the policies that it may enact but rather by the lack of policy. The absence of policies to protect Gays and Lesbians leaves organizations and individuals free to act on social heterosexism and homophobia without interference.

Medical Policies

A number of legal precedents have already been set in the absence of policy that may in fact lead to inclusive policies. The Supreme Court of the U.S. has repeatedly affirmed a couple’s right to information about reproductive choices. It would appear to follow that genetic information would be simply an extension of that right to know both for themselves (‘‘carrier’’ status) and for the embryo (Annas & Elias, 1992). There has been speculation that because of the precedent set with the Tarasoff v. Regents of University of California ruling, by which a psychiatrist must inform an intended victim of his/her danger, physicians may be mandated to use every available means to inform potential parents who are the perceived victim (Wertz, 1992). The success of several ‘‘wrongful births’’ where parents sued the physician for failure to provide adequate prenatal screening, and the threat of ‘‘wrongful life’’ lawsuits where the child sues for suffering that could have been avoided by abortion, lends support to fears that result in physicians ordering every test available (Annas & Elias, 1992). As screening tests become available, policy makers must be aware that there will likely be a high demand for them. Parents may frequently request all tests available. Ironically, demand for tests and the use of the results are not highly correlated (Robertson, 1991). A suggestion that appears to address this issue is that the education and counseling infrastructure necessary in any screening program be carried out first so that prospective parents can be advised of the meaning of the tests before deciding whether the tests are appropriate for their needs and are actually to be performed (Annas & Elias, 1992). This model is commonly used prior to HIV testing. The irony, however, is that the sector that may need the greatest control is not the public sector but the private sector. Even when the parameters are well-defined, as they are in cystic fibrosis, the public has a very difficult time understanding the results of genetic testing (Marshall, 1996). Genetic tests for BRCA1 and BRCA2 for breast and ovarian cancer are even more difficult to interpret given the uncertainties of what the genetic material actually means, the false positive and false negative issues, and the fact that the estimates are based on ‘‘cancer-dense’’ families (Kahn, 1996). None of these considerations has stopped Myriad Genetic Laboratories from marketing the test. Kahn (1996) quotes John Hooper from the University of Melbourne: ‘‘‘[A commercial test] will make money out of raising anxiety and exploiting women’’’ (Kahn, 1996, p. 496). Given the strong profit motive in this country, it would be easy to imagine an entrepreneurial service that with sophisticated advertising will create a market dedicated to reducing the risk of the birth of socially disadvantaged children, namely Gays and Lesbians.

In reality, traditional policy in a democracy is generated by the mores and values of the majority. As historically occurred with race and gender, the short-term goal must be policy based on the already established values of justice and respect for autonomy. While these shared social values have been critical to the expansion of civil rights, we still experience racism and sexism at levels that are harmful to individuals and society. Policies set limits for legal enforcement yet in our daily lives covert racism and sexism have major impact and yet are beyond the ability of most people to correct legally. If the social goal is truly to allow people to reach their full potential then we must approach the subject at a still more fundamental level than policy. Ultimately, if this discussion is pursued to its logical conclusion, we realize that this society has not decided how to define disease or normality nor how it truly values diversity.

Disease, Normality, Diversity

One of the major reasons for embarking on the sequential mapping of the human genome was to improve efficacy in the treatment and prevention of genetic diseases. Unfortunately, at no point in time have we clearly defined what we truly mean by the word disease. Take, for example, the definition in Taber’s Cyclopedic Medical Dictionary: ‘‘Literally the lack of ease; a pathological condition of the body that presents a group of symptoms peculiar to it which sets the condition apart as an abnormal entity differing from other normal or pathological body states.’’ We also talk about the relief of suffering, but what is the true difference between discomfort and suffering, and do they vary from one person to another? What distinguishes a genetic anomaly from a genetic disease, and might not anomalies bring with them some discomfort that to some would be called suffering? Traditionally the field of medicine has equated ‘‘different’’ with ‘‘disease.’’ If vitiligo is a differing only of pigmentation with no other consequence and by definition differs from the norm, it is not called different, it is called a disease at least in part because of our social response to the condition. The logical distinction between ‘‘disease’’ and ‘‘different’’ could be assigned to the locus of discomfort. If suffering is experienced directly from the condition, it is a disease. It is not a disease, however, if the suffering is actually socially imposed secondary to social values attached to the condition. In this case the remediation is appropriate at the social value locus, not at the condition itself. Yet, what is defined as disease will decide the first applications of the Human Genome Project. In some cases we could reach immediate agreement on issues such as Huntington’s disease or Cystic Fibrosis. Yet, how quickly could we reach a consensus about the status of homosexuality? Does the definition of disease truly rest with the American Medical Association and the American Psychological Association or does it not ultimately rest with the public? This distinction is pivotal to the application of justice, social equality and free will.

The more we discuss disease, however, the more obvious it becomes that we must first define ‘‘normal.’’ Some have attempted to define normal in terms of what is natural. The confusing characteristic of natural is that it is constantly changing with the interplay of random mutations and natural selection (Boone, 1988). So that while natural may mean the norm for today, it has a transient quality that leaves us uncertain about its definition tomorrow. The most enduring quality of ‘‘natural’’ is ‘‘change.’’ Perhaps even the term ‘‘normal’’ does a disservice by focusing our attention on the mean rather than the range which has been essential to allow the evolutionary selections which have enabled our survival as a species. Homosexuality has been an element of our human diversity for as long as there has been a written history and implies some reason for its continuance. There is some evidence that historically it may well have served to promote social cohesion (Byne, 1995; Dickemann, 1995). Support also exists for an increased likelihood of altruism and empathetic behavior among homosexual persons (Salais & Fischer, 1995) and may have some parallel with eusocial arrangements (Dickemann, 1995). But whatever evolutionary advantage it may have carried in the past, the more important issue is the unknown advantages Gays, Lesbians and the entire continuum of sexual and emotional commitments may offer to future societies. The future is uncertain and there is no way of predicting what qualities will be critical for survival. This uncertainty is partially the reason conservationists have been reasonably successful in preserving diversity within the plant and animal kingdoms based on an interlinking dependency gestalt. Not without controversy or debate, the environmentalists have been able to legislatively reduce individual rights for the sake of preserving even seemingly minor participants in the chain of life.

Eventually we are forced to confess that normality is not a discovery but an invention (Annas, 1989). It is an invention for which we arbitrarily select standards of acceptance. In recent history that acceptance has traditionally been determined by the existing hierarchial power structure which inherently has an interest in preserving that structure. Technology may further empower the existing hierarchy with potentially powerful tools to limit or even eliminate populations. Virginia Warren (1989) may be correct when she states that pragmatically, issues of power will never be resolved until a strategy is developed that allows people to develop a sense of worth that is not contingent on diminishing or controlling others. Until that strategy is developed, however, we must promote the value of tolerance and truly learn to value the full range of meaningful human relationships not as means to something else (i.e., reproduction) but as ends unto themselves.

Scientific Method: Fidelity and Appropriateness

Although one can approach the ethical dilemmas created by the Human Genome Project from the perspectives of arguments based on the values of diversity, justice, autonomy, or strictly on humanitarian values, one must recognize that the dilemma is one created by tenuous scientific truths and tenacious social values. In any intellectual endeavor there is a certain wisdom in knowing the limits of one’s understanding and being honest in admitting those limits. A true deception occurs when the particular parades as the whole. In research areas less burdened with prescriptive social values, biologic and behavioral domains have been respectful of their limitations. Typically one would expect biology to investigate the existence of the corporeal components of homosexuality and psychological theories to explore mental, emotional and behavioral qualities (De Cecco & Parker, 1995). Within each of these domains one expects a rigorous adherence to the methods, a fidelity, that has in other areas resulted in significant contributions. In other areas of investigation, science tends to build its theories from proven fact, or at least theory that has not been disproved. As the most common model for the expression of sexuality one would presume that a fundamental understanding of the majority, heterosexuality, would precede a relevant understanding of variations on that theme. Since sexual orientation has repeatedly been demonstrated as a continuum, rather than dichotomous discrete classifications, one must question the validity and generalizability of research which dichotomizes a continuum with virtually no attention to issues such as bisexuality, the various life stages where orientation may change for both women or men, or even the variable intensities of sexual attraction both within and between individuals. The current trend to dichotomous sexual orientation when it clearly is a continuum is an excellent example of a cognitive dissidence which must make the data fit the model, a round peg in a square hole.

It is also well established that biological life and the environment are in a constant interaction and this interaction produces systemic physical and emotional changes in the individual. Control of relevant variables is essential to the true experimental model which can make claims of cause-and-effect discoveries. When one cannot control relevant variables such as the environmental variables of heterosexism, internalized homophobia and homophobia which have profound affects on the lives of Lesbians, Gays and Bisexuals, then the researcher cannot attest to a cause and effect relationship. In the current environment one is unsure if biological results are expressions of the effects of the intervening variables or homosexuality. Good science will invariably follow good social policy which minimizes the intervening variables. But it is equally true that good science could serve as a model for social policy. If scientific inquiry, behavioral or biologic, were based on current existing knowledge of continuity rather than dichotomy, it could well serve as a model for a social policy of inclusion rather than exclusion. At the present time, however, we have failed at a primary level to be genuine to the scientific endeavor even in those areas where it applies.

Perhaps, however, our desire to understand homosexuality is frustrated by the fact that we are not asking the truly relevant questions in the correct domains. In the final analysis, we do not truly seek understanding of homosexual sexual acts, all of which occur among heterosexuals. We seek to define a difference that is clearly centered in ‘‘attraction’’ and ‘‘relationships.’’ At least in the area of relationships we do have an understanding of how the majority functions. Heterosexual relationships are intuitively understood not solely as sexual relationships but as those most fulfilling and satisfying personal relationships through which people individually find added meaning and significance. These meaningful relationships in life tend to be personal, individualized and not satisfactorily explained in a totality constructed of discrete elements of information. Is there any support to believe homosexual relationships, given the opportunity to exist, are any different?

When we do ask the meaningful questions, however, we must check the assumption that the meaningful answers can be derived from the scientific method. Reductionism is inappropriate to explain a phenomenon which cannot be fractured into discrete elements which still preserve the meaning of the whole. As De Cecco and Elia (1993) point out, the taste of a cake cannot be understood as a proportional list of the components because in the process of being baked, the elements are changed. For a complex organism such as humans, our biology and our social environment influence our interpretation of the world which in turn influences our biology and our emotional evaluation of the events and experiences in the world. While we must acknowledge the limitations of our domains of investigation and even the limits inherent in a reductionist approach, we must also acknowledge a limit to our ability to understand. There are in the expressions or attraction and relationships components that simply elude explanations, like other endeavors of the heart such as spirituality. An understanding of the expressions of homosexuality may satisfy our curiosity in some matters, but a full understanding of homosexuality, like a full understanding of heterosexuality, is experienced more than understood and should be respected not so much from the perspective of justice or nonmaleficence or even beneficence but from the perspective of autonomy understood as every person’s right to experience a full and meaningful life.