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Genethics

GENETHICS

The term genethics first appeared in the literature with the publication of a book of the same title by David Suzuki and Peter Knudtson (1989), a volume that dealt with the moral guidelines for genetic research and engineering. In a second book of the same title, David Heyd (1992) extended the definition to the field that focuses on the mortality of creating people—that is, decisions having to do with people's existence, number, and identity. Since then, the term has spawned several other books (Bayertz 1995, Burley and Harris 2002), a number of periodicals including GenEthics News, and numerous web sites, many of which are no longer active.

Is Genethics Necessary?

There has been some debate over whether the introduction of the term is advisable. While Suzuki and Knudtson and others were arguing for a genethics to deal with the problems raised by the new genetics, John Maddox in a 1993 Nature article played down the notion that the sequencing of the genome and related developments in molecular biology created ethical problems that are intrinsically unique. For Maddox, "this new knowledge has not created novel ethical problems, only ethical simplifications" (1993, p. 97). Darryl Macer (1993), in a follow-up letter, agreed that there is no inherent value clash between genetics and human values as Suzuki and Knudtson had proposed. Macer argued that the concept of genethics "should be stopped" and that what is needed instead is "a revival and renewed discussion of ethical values as society interacts with technology, and reassurance that scientists are responsible" (1993, p. 102). Society does not need a new ethics to cope with the impact of genetic technology.

Despite these objections, the term genethics is still in use and its development has received impetus from the Human Genome Project (HGP), the multi-billion dollar public-private, international initiative to map out the entire human genome begun in the 1990s and completed in 2000. Genethics was particularly fostered through the establishment of the Ethical, Legal and Social Implications (ELSI) program, under which the U.S. Department of Energy and the National Institutes of Health devoted 3 to 5 percent of the annual HGP budget toward examining such issues in relation to the availability of genetic information flowing from HGP. Specific areas of funding included the fair use of genetic information, privacy and confidentiality, stigmatization, conceptual and philosophical implications, and clinical and reproductive issues. Through this significant investment, ELSI became the largest bioethics program in the world and spawned similar endeavors elsewhere, often under the genethics moniker.

Although in some quarters the term has become a catchword for ethical issues raised by human interventions only, it is generally used more broadly to encompass the full range of ethical issues raised by advances in the science and technology of genetics and genetic engineering. In this broader sense, genethics cuts across all areas of science and technology related to engineering of genes, from human research and applications, to genetic modification of crops and animals, to other bio-technological applications such as drugs and potential terrorist and warfare uses of this knowledge (Reiss and Straughan 1996; Burley and Harris 2002). It might also be tied to secondary consequences of genetic technology such as eugenics and the link between genes and human behavior alleged to exist in drug or alcohol addiction or violence. Because some specific applications are discussed in other entries, attention here will focus on the issues surrounding human applications, largely the product of the HGP.

Increasing Knowledge

Knowledge of human genetics has undergone an accelerating expansion in the last several decades in large part as a result of the HGP. This increased knowledge and the emerging capacity to apply it for diagnostic and therapeutic purposes promise benefits to individuals and to society as a whole, but they also carry risks. These promises and risks have attracted the interest of bioethicists and social scientists as well as leading researchers. The issues raised in genethics relate directly to the almost daily announcements of new findings in molecular biology and related scientific fields and the development innovative technological applications.

Genetic intervention is especially controversial because of rapid advances in knowledge and the shortened lead time between basic research discoveries and their application. It has been estimated that knowledge in molecular biology is doubling every year, and a cursory survey of journals and Internet sites suggest that, although the shortened lead time might be exaggerated by some observers on either side of the debate, there is a rapid diffusion of applications, giving society less and less time to access their impact. In addition to challenging basic values, human genetics for some persons raises the specter of eugenics and social control (Kevles 1985). References to a "brave new world" scenario, in which human reproduction is a sophisticated manufacturing process and a major instrument for social stability, are commonplace. The notions of designer or made-for-order babies accentuate concern over this apparent quest for the perfect child (McGee 1997). Human genetic engineering is often criticized as playing God or interfering with evolution. Not surprisingly, opposition to genetic and reproductive intervention in this context is frequently intense and pits opponents against the research community and some commercial interests.

Diagnostics and Therapy

A complicating factor is the selective nature of genetic diseases. The success of genetic screening efforts often depends on the ability to isolate high-risk groups. In targeting such groups, however, problems of stigmatization, due process, and invasion of privacy arise. For instance, the early experience with screening for sickle-cell anemia in the early 1970s led to perceived and real threats to the African-American community when they experienced discrimination based on their carrier status by employers, insurance companies, and even the Air Force Academy that denied admission to those identified as having the sickle-cell trait. As DNA tests are developed to identify individuals at heightened risk for alcoholism, personality disorders, aggressive and antisocial behavior, and so forth, the fear of eugenics is bound to reemerge, thus making any attempts to screen most controversial. In this case, however, the "eugenics" is most likely to flow from decisions by individual parents who use the techniques to maximize their children's characteristics, not a social program. Some fear that once the tests become accepted as legitimate by society, it is likely that legislatures and courts will promote professional standards of care that incorporate increasingly intrusive testing.

Following the development of techniques to diagnose genetic disorders are emerging capacities to provide gene therapy. These techniques would act to correct genetic defects by acting directly on the affected DNA and could be directed at either somatic or germline cells. This move from diagnostic to therapeutic ends accentuates sensitive issues concerning the role of government in encouraging or discouraging human genome research and applications. The huge financial investment of government in many human genome initiatives clearly demonstrates a commitment to genetic technology and eventually gene therapy. In turn, however, any developments in gene therapy will raise ethical questions concerning safety, parental responsibilities to children, societal perceptions of children, the distribution of social benefits, and definitions of what it means to be human.

Both diagnosis and therapy constitute expansions of genetic knowledge, which can pose ethical challenges both for social and personal use. Socially, there is the problem of discrimination in attitudes not only toward individuals with certain genetic diseases but also toward how individuals might handle such possible knowledge. Personally, some individuals might choose not to know, and it is not clear that this would always be as equally acceptable as knowing.

Immediate genethics issues involved with this expanding genetic knowledge center on problems of discrimination and stigmatization. Genetic information of the type now promised is self-defining and can easily stigmatize individuals, thus enabling others to discriminate against them on the basis of such information. In fact, no information is potentially more invasive of personal privacy than tests that provide precise and inclusive knowledge of a person's genetic makeup. One issue that requires urgent attention concerns access to sensitive information collected through voluntary screening programs. Because such information is potentially embarrassing and humiliating, individuals must be protected from unauthorized disclosure. Even when confidentiality is assured, maintaining the security of genetic records will be difficult, though these are mostly questions of policy not ethics.

This problem is even more difficult, however, because there are circumstances that may warrant disclosure despite risks to patient privacy. Because genetic traits may be present in other family members, one question concerns the possible rights of these family members to any information relevant to their own well-being. Under what circumstances may a genetic counselor or physician disclose genetic information that might affect another family member or even future progeny? These issues of confidentiality and privacy, of course, are heightened significantly if mandatory genetic screening programs are instituted. Given technological developments, genetic tests are soon likely to be routine health indicators, only more precise and accurate than conventional ones. This will lead employers and insurance companies to screen potential employees or those applying for insurance for an array of genetic traits. At the same time, companies might want to include such tests in health promotion or preventive medicine programs with, for instance, persons identified as having a genetic proclivity toward hypertension placed into early diagnosis programs.

When, if ever, is an individual right to genetic privacy to be sacrificed to the interests of an employer? Under what circumstances does the responsibility of a genetic counselor or physician to society outweigh responsibility to the patient? As health care costs continue to escalate, employers will find it attractive to use genetic screening to exclude individuals who might cost them large sums of money in terms of future health bills. This is particularly critical if predictive tests are developed for general health status or for susceptibility to heart disease, cancer, diabetes, or alcoholism. Insurance companies, too, have a stake in data obtained through these methods. Genetic tests could be used either to determine insurability or to establish premium rates on the basis of test results. Life insurance companies traditionally have excluded people who are poor health risks and could easily extend this through tests that place certain individuals at risk for a wide range of conditions or diseases. Likewise, health insurers know that a large proportion of health care costs are attributable to a small proportion of the population, and as tests become available to identify individuals who are genetically predisposed to ill health, this is likely to put pressure on employers to screen prospective employees.

Confidentiality questions become more problematic when DNA or gene data banks are created where thousands of samples of blood, hair, or other tissue are stored for future use. The creation of such banks for criminal investigations elicits intense controversy. The issue is even more complex because unlike traditional fingerprints or other records (medical, credit, criminal) that are currently maintained, the DNA record contains potential as well as actual information. New genetic discoveries permit new information to be decoded from old samples. As science and technology advances, samples collected for a specific use could be used for totally unrelated purposes. Given the uncertainty of just how much and what type of data may be decoded from samples in the future, it is all but impossible to provide fully informed consent. Furthermore, questions remain as to who has proper access to this storehouse of knowledge on potentially millions of individuals.

Commercialization and Allocation of Resources

Although considerable public resources are being invested in human genome initiatives by governments, genetic tests and other applications will largely be influenced by commercial interests. Huge profits are likely to be made, especially as predictive tests for common disease categories are developed. Moreover, it is likely that DNA banking will include a significant entrepreneurial component in both the testing and data development components. Some observers argue that it is critical in light of ethical concerns over record-keeping, confidentiality, and so forth, that the emerging genetic industry be monitored closely and regulated where appropriate to guard sensitive data, control for the possibilities of error, and protect the economic and personal stakes involved.

Other issues inherent in the development of the new genetics involves decisions as to how these resources will be distributed and how high a priority they should be given in funding. Although resource allocation questions have not generally been at the center of genethics, they are becoming more critical because whereas resources are finite, demands and expectations fueled by new technologies have few bounds. While it is premature to speculate about the relative costs and benefits of yet undeveloped procedures, it is logical to assume that gene therapy will be a complicated, costly procedure. Will access be equitable and coverage universal, and, if so, how will it be funded? Or, will it be yet another reproductive technology available to the affluent but largely denied to persons who lack sufficient resources?

Should these technologies be available to all persons on an equal basis? Maxwell J. Mehlman and Jeffrey R. Botkin (1998) make a persuasive case that access to the benefits of genome technologies is bound to be inequitable. The traditional market-oriented, third-party-payer system leaves out many people. The debate over whether or not the government has a responsibility to facilitate access will intensify as the scope of technological intervention possibilities broadens. What criteria should be used to determine who gets the benefits of the HGP, especially given that considerable research has been financed with public funds?

More broadly, what priority should the search for genetic knowledge and ever-expanding uses of this knowledge have vis-à-vis other strategies and health care areas? What benefits will it hold for the population as a whole, compared to other policy options? In recent decades there has been a proclivity to develop and widely diffuse expensive curative techniques without first critically assessing their overall contribution to health. Similarly, research has been rapidly transferred to the clinical setting, thus blurring the line between experimentation and therapy. In contrast, the availability of effective and inexpensive genetic tests could provide valuable information for disease prevention and health promotion by targeting individuals who are at heightened risk for diseases that could be reduced by early intervention. Therefore, to the extent it furthers preventive efforts, genetic technology could be cost-effective.

The Genethics Controversy

This brief discussion of genethics and the new scientific and technological environment of genetic knowledge and expanding capacities to apply it demonstrate the challenges facing all societies. The revolutionary nature of such developments and the far-reaching implications of how people view themselves and others, requires a reevaluation of how far human genetic intervention should proceed. Additional questions to be addressed more clearly by genethics concern the impact of each potential application of the HGP on society, on individual members, and on the way members of that society relate to each other. Here genethics has been criticized by some observers.

One criticism of genethics and genetic policymaking to date is that they have been largely reactive in scope, pointing out potential problems without assurance they will occur, but offering little in the way of anticipatory solutions in the event they do. Although national commissions or similar bodies have studied these issues and made recommendations in many countries, and the ELSI program has produced innumerable academic studies, most governments have chosen either to take an affirmative stance through funding genome research and encouraging diagnostic and therapeutic applications, or they have attempted to avoid the issues raised.

Another criticism of genethics is that it has been almost exclusively the domain of ethicists and journalists, who in some cases make little effort to communicate with the genetic science and research community and often take a combative stance on the issues (Maddox 1993). Not surprisingly, some in the genetic research community see genethics as an irritant at best and a hostile force against scientific and technological process at worst. In the process, the broader public is often sidelined. Although enlightened public debate over goals and priorities related to the issues raised here seems warranted, it can be argued that genethics has not gone beyond providing a framework for action by clarifying the ethical and moral issues surrounding the science and technology of genetics. While this might be a start, Bartha Maria Knoppers (2000) sees as discouraging the "general failure to develop and include the ethics of public interest, public health, and the notion of civic participation in genetic research for the welfare of the community or for the advancement of science" (p. s38). By focusing on the problems and issues raised by the new genetics, genethics might be overlooking a variety of potential societal benefits. The costs of avoiding admittedly risky technologies out of the fear of potential stigmatization, commodification, or other ethical problems for the individual, then, might be high if it means foreclosing benefits for individuals and society.

In summary, genethics is inextricably related to science and technology and is a product of rapid developments in molecular biology and related fields since the mid-twentieth century. Although one could widen the concept of genethics to include the study of eugenics pre–double helix, the term as applied today represents a direct response to molecular biology and the science and technology surrounding the genome, and thus it is inextricably tied to and guided by it.

ROBERT H. BLANK

SEE ALSO Bioethics; Biotech Ethics; Fetal Research; Gene Therapy; Genetic Counseling; Genetic Research and Technology; Health and Disease; Human Genome Organization; In Vitro Fertilization and Genetic Screening; Medical Ethics; Playing God; Privacy.

BIBLIOGRAPHY

Bayertz, Kurt. (1995). GenEthics. Cambridge, UK: Cambridge University Press. Attempts to clarify the ethical dimensions generated by new human reproductive and genetic advancements. Most emphasis is on the reproductive assisting technologies.

Burley, Justine, and John Harris, eds. (2002). A Companion to Genethics. Oxford: Blackwell. This 600-page edited volume is a comprehensive look at the philosophical, ethical, social and political dimensions of developments in human genetics.

Heyd, David. (1992). Genethics: Moral Issues in the Creation of People. Berkeley: University of California Press. Heyd attempts to resolve many ethical paradoxes in intergenerational justice raised by advances in medicine, genetic engineering, and demographic forecasting.

Kevles, Daniel J. (1985). In the Name of Eugenics: Genetics and the Use of Human Heredity. Berkeley: University of California Press. Seminal work on history of eugenics and the eugenic implications of new reproductive technologies.

Knoppers, Bartha Maria. (2000). "From Medical Ethics to 'Genethics."' Lancet 356(suppl. 1): s38. Short article argues for the inclusion of the ethics of public interest, public health and the notion of civic participation in genetic research for the welfare of the community.

Macer, Darryl. (1993). "No to 'Genethics."' Nature 365(6442): 102. Letter in Nature that argues that concept of a separate "genethics" should be stopped because the ethical issues raised by the application of genetics are not novel.

Maddox, John. (1993). "New Genetics Means No Ethics." Nature 364(6433): 97. Contends that the opinion that genome sequencing will create novel ethical problems is mistaken and that these techniques are unlikely to be any more troublesome than genetic manipulation of bacteria decades ago.

McGee, Glenn. (1997). The Perfect Baby: A Pragmatic Approach to Genetics. New York: Rowman and Littlefield. McGee denies the necessity of a "genethics," arguing that the wisdom we need can be found in the everyday experience of parents.

Mehlman, Maxwell J., and Jeffrey R. Botkin. (1998). Access to the Genome: The Challenge to Equality. Washington, DC: Georgetown University Press. After summarizing the Human Genome Project, the authors discuss its practical health applications and ethical and policy challenges such as banning them, equal access, genetic handicapping, and genetic lotteries.

Reiss, Michael J., and Roger Straughan. (1996). Improving Nature? The Science and Ethics of Genetic Engineering. New York: Cambridge University Press. Covers a broad range of ethical and theological concerns inherent in genetic engineering of microorganisms, plants, animals, and humans.

Suzuki, David, and Peter Knudtson. (1989). Genethics: The Clash between the New Genetics and Human Values. Cambridge, MA: Harvard University Press. The authors propose a set of genetic principles that emphasize individual rights and confidentiality with regard to genetic screening, caution in violating boundaries across species, and a ban on biological weapon development and the genetic manipulation of human germ cells.

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