American Journal of Law & Medicine

Globalization and biotechnology: UNESCO and an international strategy to advance human rights and public health.


The global Human Genome Project (HGP) promises dramatic advances in biomedical science and in identifying and treating diseases and illnesses that exact an enormous toll on people throughout the world.(1) The HGP portends a conceptual revolution in health care: many foresee a new "predictive medicine" based on the development of genetic screening, testing and gene therapy.(2)

Although advances in genetic science create the potential for dramatic progress against disease in rich and poor states, they also pose profound national and global policy concerns, including the potential impact of the scientific developments on human rights and public health. The development of more precise genetic information raises the specter of genetic discrimination by public and private sectors in all nations with access to the new technologies. In addition, nations will grapple increasingly with the appropriate balance between screening for and treatment of genetic diseases in order to promote public health and protect individual rights to privacy and confidentiality. Genetic screening and services also raise human rights questions relating to equitable resource allocation and the protection of public health.

The enterprise of mapping and sequencing the human genome is well underway. However, the legal framework for ethical and policy considerations that follow from the advances in genetic science lags far behind. In most nations, legislation addressing the social implications of technological developments is either haphazard or nonexistent. The rapid development of science and its technological applications demands urgent, profound and continuous national and international discourse and action on their implications for human rights and public health. It will take carefully crafted and broadly implemented laws in all nations to prevent the misuse of genetic information gained through intimate knowledge about individuals. A framework is also needed to guide the development of genetic science to ensure that its benefits are available worldwide and used in a manner that will promote national and international health.

The global implications of the HGP demonstrate that the initiative is inherently international, necessitating collaborative multilateral cooperation to promote global public health and to protect human rights while advancing scientific research and discovery. Recognizing the need to coordinate efforts in anticipation of the widespread international social implications of genome research and the need to harmonize national policies to guide the use of the knowledge that the HGP research produces, in November 1997 the General Conference of the United Nation's Educational, Scientific and Cultural Organization (UNESCO) took an important first step in promoting global cooperation by adopting the Universal Declaration on the Human Genome and Human Rights (the Declaration).(3) UNESCO has indicated that the Declaration may be followed by the development of a binding convention.(4)

Drafted by the legal commission of UNESCO's International Bioethics Committee (IBC), a panel of forty independent experts charged with promoting the development of international instruments on the human genome,(5) and finalized by a committee of intergovernmental experts,(6) the seven chapters of the Declaration address areas such as research on the human genome, human rights of persons concerned and the duties of states to foster international dissemination of scientific information on the genome.

This Article considers the broad range of substantive human rights and public health concerns that were not adequately addressed in the Declaration and the types of international supervisory procedures that should be developed to promote its implementation. Although the Declaration is the most thorough global initiative thus far to consider the human rights implications of the HGP, it neglects a number of human rights concerns, including how technological developments may lead to discrimination on the basis of race, gender, ethnicity, family membership or disease status. Further, the instrument overlooks the critical national and international public health considerations raised by the new technology and how interests in human rights promotion and public health protection must be balanced.

Also of significant concern is the absence of any procedural mechanism for international supervision of the implementation of the Declaration. This Article argues that UNESCO and its member states should consider what role international supervisory instruments can play in encouraging national commitment to, and compliance with, the Declaration. International supervision of state implementation of international obligations is perhaps the most powerful mechanism available to international organizations to ensure that nations give appropriate and adequate attention to their international commitments. Effective supervision of the Declaration may also contribute, over time, to building global support for the development of a binding instrument on the human genome and human rights.

UNESCO, the premier international organization in the fields of science, culture, communications and education, has the legal authority to negotiate and sponsor the codification and implementation of international instruments advancing technology, public health and human rights.(7) UNESCO, however, faces critical political and practical challenges that raise the question of whether it has the organizational capacity to steer the massive global efforts necessary to encourage nations to address the social implications of the HGP.(8) This Article argues that the time is ripe for UNESCO to revise current practices and emerge as a forum for the advancement of effective international instruments addressing the fundamental global implications of the HGP. The experience of other international organizations in using supervisory procedures provides guidance on how UNESCO can judiciously design and pragmatically implement an international supervisory process that can further national action to protect human rights and promote public health. Promoting and harmonizing national legislative responses to the HGP presents an extraordinary opportunity for UNESCO to reaffirm and strengthen its commitment to human rights and to enhance and reinforce its institutional relevance to the world community.

This Article addresses the interface among human rights, public health, biotechnology and international law. In particular, it analyzes substantive provisions and procedural mechanisms that can be employed to establish UNESCO's Declaration as an effective, relevant tool to promote and guide the development of appropriate national law and policy on the protection of human rights and the promotion of public health in this era of technological developments. Part II describes recent advances in genetic science and the potential that the HGP holds for important progress in the global struggle against illness and disease. Part III assesses the legal and social impact of technological developments and, in particular, the potentially problematic ramifications of the initiative on human rights and global public health. This section also describes recent national legislative action related to advances in genetic science and the role of international human rights instruments in current debates about the HGP. Part IV analyzes UNESCO's role in addressing the global human rights implications of the HGP and critically analyzes the Declaration.

Part V describes the evolution of international supervisory mechanisms in the United Nations system and draws on the experience of other international organizations and treaty bodies in using supervisory mechanisms to suggest specific supervisory procedures to promote international consensus and national implementation of the Declaration. This section also addresses UNESCO's organizational dynamics. Finally, Part VI describes how UNESCO can design, strengthen and implement a new supervisory institution for the implementation of the Declaration. Overall, this Article will show that UNESCO's effective use of international law and supervisory mechanisms can educate, motivate and assist state leaders in addressing the widespread social implications of genetic science and may thus make an important contribution to the practical implementation of standards to protect human rights and promote public health.



The HGP is a worldwide initiative to map and sequence the entire chain of human deoxyribonucleic acid (DNA)(9) and the location of all genes. Advances in recombinant DNA techniques and in chromosome mapping over the last several decades(10) culminated in the objective to map and sequence the entire human genome.(11) By virtue of its expansive aims, the HGP has been described as one of the "most ambitious scientific projects" ever undertaken.(12)

The HGP is a global, collaborative, scientific effort consisting of a number of national and international programs that began in the mid-1980s.(13) The largest of the national efforts is in the United States,(14) where the federal government contributes over $200 million a year to gene therapy research; the research efforts of U.S. pharmaceutical companies are said to be even larger.(15) Other countries with substantial involvement in the project include Canada, France, Japan and the United Kingdom.(16) Nations including Italy, the Netherlands, Germany, Sweden and Denmark, have established more modest scientific involvement in the HGP.(17) Regional organizations, such as the European Union,(18) as well as international organizations, including the World Health Organization (WHO),(19) are also involved in efforts to support human genome investigation.(20) The expansive global collaborative research efforts are coordinated on an ongoing basis by the Human Genome Organization, an independent organization of international scientists established in 1988.(21) The rapid scientific progress of the HGP in the last decade has been attributed, in part, to this "international collaboration and cooperation on a hithertofore almost unimaginable scale."(22)

The HGP was established with the extraordinary mission to map and sequence the entire chain of human DNA: that is, to clarify the genetic architecture of the human genome. Genes are responsible for the functioning and operation of every cell in the human body.(23) Essentially,

  [g]enes contain the chemical information that make cells work by 
  instruct[ing] the cellular machinery to produce proteins vital to the cells' 
  function. When a gene is damaged (mutated), the protein-making instructions 
  can get garbled. Disease can result if the cell is unable to produce a 
  protein it needs to be healthy or if it produces an abnormal version of that 
  protein. Thus, identifying, isolating and studying genes ... is a powerful 
  approach to achieving a better understanding of diseases.(24) 

Unparalleled advances in genetic sciences are providing more and more examples of the critical role that genes play in human health. There are between 50,000 and 100,000 human genes, approximately 5,000 of which are known to be associated with hereditary conditions.(25) Scientists concur that "evidence is mounting that genetic factors underlie susceptibility to a broad range of human health problems."(26)

Although genetic factors play a cardinal role in human health, not all aspects of health, disease or behavior can be reduced to or determined by the structure and the function of the genome.(27) Because the pathology of a genetic disorder is not dictated by genetic mutation alone,(28) not every individual with mutated genes(29) in his or her genome will suffer from a genetic disorder. Commonly, several genes, as well as environmental and endogenous factors, contribute to the pathology of genetic diseases.(30) The genetic contribution to this etiology is usually a predisposition to develop particular ailments.(31) Therefore, "differences between sex, race and general intelligence" or "problems of criminality, behavioral deviation and individual capability" cannot be reduced to or "accounted for solely from genetics."(32) In short, genetics cannot provide an "all-explanatory"(33) theory for human individuality. Recognizing the inherent limitations of genetics inquiries, it is nevertheless clear that research into the basis of life has revealed vast new possibilities for global human health.


1. Understanding Disease

The underlying rationale for the HGP is the contribution it can make to understanding the genetic basis of diseases. The ultimate goal of the HGP is to identify all the human genes.(34) Isolating and identifying genes that underlie the host of human diseases and other traits may be the most direct, and possibly the only way, to ascertain the biological defects contributing to morbidity.(35)

The HGP is revolutionizing the process of gene discovery by using genetic and physical maps to make identification of disease-related genes quicker and easier.(36) Current research in human genetics is providing further examples of genes linked to both common and rare diseases.(37) The intellectual contribution that the HGP has made to understanding the processes underlying human diseases may ultimately lead to treatments and cures.(38)

2. Genetic Screening

As understanding of gene-linked diseases is expanding, the ability to test for defective genes is also improving.(39) The identification of defective genes through screening has become a "relatively inexpensive and, increasingly commonplace occurrence."(40) A wide range of tests are now available to detect genetic predisposition and status as a carrier of a genetic disorder that might affect one's children.(41)

In industrialized nations, there is an extensive public health tradition of screening for both genetic and infectious diseases.(42) In the U.S., for example, many state and federal public health programs of the 1960s and 1970s emphasized genetic screening, especially for newborns.(43) In industrialized countries, prenatal screening for neurotube defects, Downs syndrome and other fetal malformations is now common,(44) while newborn screening to test for the presence of key genetic diseases, including phenylketonuria(45) and hyperthyroidism, is also routine.(46)

As a result of scientific advances in gene identification, genetic tests are now available for a wide range of disorders.(47) In addition to prenatal and newborn screening, genetic test kits are available for: autosomal recessive disorders for diseases in which pathology progresses from birth, such as cystic fibrosis, sickle-cell anemia and Tay-Sachs disease(48); late onset disorders which will not manifest until adulthood or later, such as Huntington's disease, polycystic kidney disorder and Alzheimer's disease;(49) susceptibilities to some cancers,(50) including breast cancer and sarcomas; as well as coronary heart disease and diabetes.(51)

Advances in genetic screening are ushering in a new era of "preventive medicine" that "can run the gamut from prenatal diagnosis to carrier screening to detection of predispositions...."(52) Scientific developments allowing for detection of genetic predispositions make it possible, in appropriate cases, to avoid premature disease by identifying susceptible individuals, who can then be advised on efficient preventative measures, such as lifestyle changes, or be provided with conventional therapy.(53)

The striking advances in genetic science are leading to the creation of screening tests that may monitor the actions of thousands of genes at a time.(54) In particular, pharmaceutical companies and academic biologists are developing "DNA chips."(55) Experts contend that more powerful versions of the DNA chip could be developed to monitor common sites of genetic variation in humans and could, therefore, forecast a person's susceptibility to many diseases.(56) Consequently, the DNA chip could become a valuable tool for screening entire populations,(57) because testing individuals for a host of genetic diseases may become easy and cost-effective with this new technology.(58)

3. Treatment

An expanding gap is developing between the diagnostic ability to identify genetic problems and predispositions, and effective therapeutic interventions to treat or cure conditions.(59) Although a wide range of genetic tests are increasingly available, few promising gene therapies for genetic disorders currently exist,(60) and the short-term prospects for widespread advances in therapeutic interventions look uncertain.(61) Nevertheless, the improved understanding of genetic defects does hold the possibility of development of treatments and cures for illness and disease. A range of therapies might be developed in response to increased understanding about the nature and location of genes that contribute to diseases.(62) For example, knowledge gained from genetics research about underlying genetic defects may heighten understanding about pathogenesis and create the prospect of designing effective and rational pharmacological agents.(63) In addition, advances in genetic science may also allow researchers to produce synthetically human biochemical substances for therapeutic use.(64)

The ultimate contribution of the HGP may be to provide a powerful resource for developing dramatic new gene therapies that may cure diseases that now commonly lead to morbidity and mortality.(65) Gene therapies, both somatic and germ-line,(66) may be crafted to inject reworked genes directly into cells to provide the missing cellular structures or metabolic activities.(67) Somatic gene therapy, involving the insertion of a new gene into ordinary organs or tissue cells,(68) is limited to correcting genetic abnormalities of the individual being treated and does not prevent future occurrences of the disease.(69) In contrast, germ-line therapy involves manipulation of the DNA of germ cells (ova or sperm)(70) that could be passed on to future generations.

The potential applications of gene therapy extend beyond the treatment and cure of rare, inherited diseases.(71) This technology might be used to treat and cure some acquired and common disorders, such as certain cancers and heart disease(72) and some psychiatric disorders.(73) It may also be possible to use gene therapy to treat individual infectious diseases(74) or to boost the immune system of individuals.(75) Research has suggested that genetic factors may affect an individual's immune system and increase susceptibility to a wide range of infectious diseases.(76)

The HGP promises to revolutionize medicine. Medical treatment is likely to evolve from current concepts of therapy that involve merely treating the symptoms or other physical manifestations of illness. As a consequence of advances in genetic science, future diagnosis, prevention and therapy may be commonly tailored to fit the unique genetic profile of each person instead of relying primarily on consideration of the individual case within disease groups.(77) This extraordinary capacity is unprecedented in modem medicine and creates immense new possibilities for improving human health globally.(78)

The potential global public health implications of these promised gene therapy treatments and cures are profound. The tools and treatments generated by the HGP may have a dramatic effect on diseases that afflict industrialized nations, as well as those that scourge developing states.(79) In industrialized states, the main causes of death, including cancer, cardiovascular disease, stroke and autoimmune disorders, all involve complex interactions between genetic factors and environmental conditions.(80) The tools of genetic science will play an increasingly important role in understanding and potentially treating and curing many of these conditions.

Genome research is also likely to generate new diagnostic tools and treatments for afflictions, particularly infectious diseases,(81) that are the particular curse of developing nations.(82) The medical applications of DNA research extend beyond genetic disorders, and could be applied to some infectious diseases as well as common noncommunicable disorders.(83) In fact, some observers suggest that "developing nations may benefit particularly from the simple, rapid, and inexpensive identification of pathogenic organisms that molecular genetic techniques connected with genome mapping might yield."(84) The possibility that genetics research may be able to develop techniques to cure particular infectious diseases that kill millions each year in developing countries, or result in technology that could enhance the capabilities of individuals' immune systems and make them better able to fight off viruses, are examples of the extraordinary contribution that genetics research could make to the health status of poor as well as rich nations.(85) Consequently, the applications of genetic technology may spread rapidly throughout developing nations(86) to the extent they become available and affordable.(87)

The globalization of public health(88) further proves the critical public health interest that all nations have in the potential products and processes generated by the HGP. Although the current structure of morbidity and mortality varies enormously within rich and poor states.(89) dramatic changes in global social, political and environmental factors, including accelerating growth in international travel, trade and commerce, and changes in environmental conditions and disease etiology, are creating areas of convergence and international interdependence in public health.(90) For example, infectious diseases, the primary cause of premature mortality in poor states, are currently becoming a leading cause of premature mortality in industrialized nations, including the U.S.(91) Another evolving area of international health interdependence is tobacco-related diseases,(92) including cancer and heart disease, which are presently the primary cause of premature death in industrialized states.(93) WHO predicts that if current spiraling trends in tobacco consumption in developing nations continue, smoking will be the leading cause of premature mortality worldwide within the next thirty years.(94) Overall, with further economic development, health problems in poor states will increasingly mirror those of the rich states.(95)

Worldwide, the increasing interdependence of public health conditions suggests that the health status of one nation cannot be isolated conceptually or practically from that of other nations. Contemporary health challenges are increasingly international in origin, so the developing promise of the HGP and the global spread of diagnostic tools and treatments generated from the initiative are a global concern that necessitates collaborative, multilateral action.



1. Human Rights

Research into the genetic basis of life is creating a plethora of new possibilities to diagnose, treat and prevent genetic disorders. The development of commercial genetic tests and therapies flowing from the HGP may equip individuals with new information to appraise reproductive choices and to prevent disease. However, the potential for the abuse of such intimate information raises profound concerns about the protection of the human rights of individuals and their families in all nations where and when such technologies become available. Although not raising new issues in medicine and human rights, the HGP exacerbates old ones, especially regarding privacy, disclosure of genetic information and freedom of reproductive choices.(96)

The human rights implications of advances in screening and treating genetic diseases are wideranging: "These issues include what information can be collected, how, by whom, on whose authority, for what purpose, how and to whom the information is disclosed."(97) The availability of genetic information about individuals raises questions about autonomy,(98) privacy,(99) informed consent(100) and genetic discrimination resulting from inappropriate use of genetic data. Access to this kind of information by private or public institutions raises the possibility of restrictive or exclusionary action based on that information. Many observers have expressed profound concern about the threat to personal privacy and the potential for genetic discrimination by third parties who have an interest in gaining access to private information, including employers, insurers, schools and governments.(101) For example, employers may use genetic criteria to assess prospective productivity, while insurers will seek to limit their liability for genetic defects.(102) Individuals may rightly fear discrimination in areas including, but not limited to, employment and insurance coverage, if they reveal genetic test results, which are frequently misinterpreted.(103) Indeed, cases of genetic discrimination in insurance and employment have already been widely documented since the beginning of this decade.(104)

The human rights implications of genetics research on human subjects, including cross-border research on human subjects in developing nations,(105) must also be considered. The international nature of human genome research highlights the need for common principles and practices to protect individuals from potentially dangerous genetics research and to ensure the full and informed consent of participants.(106)

Particular concerns have been voiced about the potential impact of the HGP on reproductive freedom.(107) Advances in genetic technology can enhance procreative freedom by expanding reproductive options,(108) but they can also create increased pressures for reproductive responsibility(109) and critical threats to reproductive autonomy. Absent appropriate and affordable treatments and cures, a central human rights issue in the context of prenatal screening is the potential mother's freedom to choose what she considers the most desirable response to the knowledge that she is a carrier of a genetic disease or that she is pregnant with a fetus with a genetic defect.(110) Commentators have increasingly expressed concern over the role of directive counseling in limiting reproductive autonomy.(111) An October 1994 Chinese law, for example, includes provisions requiring physicians to advise termination of the pregnancy if a fetus is affected by a serious genetic disorder.(112) The availability of genetic tests also raises human rights concerns about the abuse of these tools for prenatal sex determination. India, for example, recently promulgated a law prohibiting the misuse of genetics techniques for the purposes of female feticide.(113)

The prediction of defect and disease in individuals may also lead to group stigmatization.(114) The presence of genetic traits or defects that correlate with membership in ethnic or racial groups can exacerbate existing social inequalities among and within nations.(115) Since genetic information is complex and difficult to interpret, it could be used to create or legitimatize existing social disparities on the grounds that race or ethnicity are linked to genetically based characteristics.(116) Genetics research may also result in the classifications of groups and discrimination on other common ties of heredity and disease.(117) Of particular concern are advances in genetic science that have led to discrimination against women based on their reproductive capacity and the likelihood that such group discrimination will expand as genetic technology becomes increasingly available.(118)

Authorities argue that genetic information can lead to group stereotyping on a variety of bases with the resulting creation of "biological underclass[es]."(119) Both among and within nations, the use of genetic information to define or classify people might be used to create, change or redefine social relations between groups and be invoked as a tool for group discrimination, particularly against groups who are otherwise marginalized by society.(120) In some nations, ethnic identification through HGP technology may raise other concerns about individual and group preservation.(121) As one commentator has observed, "[t]here are parts of the world where simply to be identified as a member of a non-dominant tribe or linguistic group is dangerous, sometimes highly so. It may be necessary to protect the confidentiality of entire communities--no easy task."(122) The dramatic rise of "ethnic conflicts" during this decade, including in the former Yugoslavia, Rwanda, Burundi, Georgia, Russia, Sri Lanka, India and the Sudan, to mention only a few, suggests the inherent danger of technology that can be inappropriately used to classify individuals on the basis of ethnic or racial makeup. Although contemporary genocide is largely a low-tech affair with respect to the use of sophisticated tools of biomedical technology,(123) there undoubtedly exists a substantial potential for devastating abuse of new genetics technology for genocidal purposes in the future.

The potential for abuse of personal genetic information raises critical human rights concerns in all nations, including issues related to informed consent, privacy, discrimination and the development of standards for the protection of confidential information.(124) The potential advancement of the DNA chip, which may enable mass screening for potentially thousands of genetic markers, intensifies such concerns about future human-rights abuses.(125) Further, the current interim phase of HGP technology, offering diagnostics for numerous afflictions without the prospect for therapy, poses perhaps the most negative individual and group consequences, including discrimination, loss of employment and insurance, and social stigmatization.(126)

2. National and Global Societal Implications

Advances in genetic science also pose numerous societal questions of global concern. Societal issues cluster into three areas: equitable resource allocation, protection of the human species and public health protection and promotion. These global social implications of the HGP further highlight the need to forge a collaborative, multilateral dialogue and response regarding the appropriate applications of advances in genetic science.

a. Resource Allocation Issues(127)

The potential benefits of HGP diagnostics and therapies raise controversial questions about universal access to genetic services in rich and poor nations and about duties of international assistance. Genetic services may generate or exacerbate existing social inequalities in all nations to the extent that access to genetic services is determined by affluence and social power.(128) Within the U.S., for example, the debate continues about whether public health services and facilities should be established for genetic diseases as they have been for infectious diseases and whether they should be part of existing public health programs.(129) As a practical matter, "genetic services remain among the most poorly funded public health programs" in the United States.(130) Inequity in access to genetic services is of even greater concern in developing nations.(131) Although experts have emphasized the critically important and cost-effective role that genetic services can play in universal primary care programs for promoting health conditions in developing nations,(132) in most developing countries genetic services are either nonexistent or at an early stage of development.(133)

The potential inequity in the global distribution of genetic services creates the potential for widening the gaps in health standards that already exists between and within rich and poor states.(134) Given the global, collaborative nature of the HGP research, controversy exists among nations about the obligations to internationalize the findings of genetic science(135) and the duties of rich states to provide international assistance to developing nations for the development of basic genetics services.

b. Integrity of the Human Species

Advances in genetic science raise controversial global issues regarding genetic manipulation of the human species; in particular, how to promote full realization of the biosocial potential of humans in a manner consonant with the integrity of each individual and the whole species. As described above,(136) germ-line therapy offers the prospect of passing on genetic changes to the progeny of a patient because genetic changes would be inherited by the offspring of the treated patient. Proponents of germ-line therapy argue that DNA manipulation through such technology could potentially be used to eliminate genetic diseases entirely and not simply to treat their effects.(137) Others argue, however, that direct, irreversible manipulation of the human genome can lead to tragic mutations in future generations.(138)

Further global debate is centered on the appropriateness of using germ-line therapy for nonhealth uses such as enhancements that defer the effects of aging-like more muscular physique, greater energy, endurance or even wrinkle-free skin, and intellectual enhancements such as greater memory or general cognitive ability.(139) Critics of germ-line therapy suggest that technology aimed at improving the human species could be used inappropriately as a tool of genetic reductionism(140) and eugenics.(141) The potential dehumanizing aspects of germ-line therapy have led a number of nations, including Brazil(142) and Switzerland,(143) to reject, as a matter of law, any development of such therapies. The recently adopted European Convention on Human Rights and Biomedicine also prohibits germ-line therapy.(144)

The prospect of cloning human beings, a revived topic of intense popular interest since the since the February 1997 cloning of a lamb,(145) also raises global policy questions about ensuring the integrity of the human species.(146) The sheep cloning prompted a swift response from some national and international policymakers(147) and scientists(148) who rejected as a matter of policy the possibility of research on human cloning.

c. National and International Public Health

Balancing conflicting claims to human rights and the protection of public health in light of new genetics technologies is also an area of evolving global concern. International human rights norms seek to promote and protect individual rights and, to some degree, the rights of vulnerable groups against arbitrary and unwarranted state interference.(149) In contrast, the area known as public health law is primarily concerned with states' efforts to regulate the conditions that affect health and provide health services.(150)

Contemporary health scholars recognize that human rights and the protection of public health are intertwined and interdependent.(151) Although public health officials historically emphasized the role of coercive powers, including mandatory screening, modern public health thinking favors an ethic of cooperation, confidentiality and consent.(152) Evolving approaches to public health also emphasize human rights concerns, including respect for individual rights, autonomy and access to health services.(153) Globally, there is growing recognition among public health specialists, arising primarily from public health approaches to the acquired immune deficiency syndrome (AIDS) pandemic,(154) that protection of human rights is a vital component of protecting public health.(155) Hence, human rights and public health concerns are frequently in harmony.(156)

In the context of the HGP, the general purposes of public health policy with regard to advances in genetic science are largely compatible with human rights concerns, including issues such as equitable access to genetic services, autonomy, nondiscrimination and informed consent.(157) As Frank Grad has aptly noted, what this recognition means in the area of genetics is "an emphasis on autonomous decision making and a deemphasis on mandatory screening and testing" to the fullest extent possible.(158) There may be narrow areas where mandatory approaches are required, when "the value of personal autonomy and personal decision making may have to yield to significant long-term interests of other persons which might be disregarded if formal consent is insisted upon."(159) Therefore, tension between human rights and public health approaches persists.

A controversial area of national and international concern in the HGP demonstrating this tension is the appropriate balancing of conflicting claims of human rights to privacy and autonomy, with the protection of the public health in light of new genetic technologies.(160) For example, mandatory population-based screening programs may be an appropriate public health measure for the purpose of eliminating a genetic condition.(161) Additionally, in some limited circumstances, disclosure of an individual's confidential genetic information may be justified despite the absence of his or her consent.(162) For instance, if a third-party relative is likely to suffer a genetic condition for which a cure, treatment or preventative lifestyle strategy is available, an argument could be made for the breach of confidentiality.(163) Recognizing that governments' efforts to protect the community welfare may require some intrusions on individual rights, international human rights law authorizes limits on individual exercise of some rights in narrow circumstances where it is necessary to protect the general welfare.(164)

Any proposal to use genetic information for public health programs, however, raises concerns about national eugenics policies.(165) It has been suggested that experience in the first half of the twentieth century with nativist American(166) and Nazi(167) eugenics policies illustrate the inherent dangers of genetic screening programs.(168) Public health experts argue persuasively that the contemporary exercise of regulatory powers to protect the public health should not raise fears of eugenics policies in industrialized states.(169) Cause for concern exists, however, about the potential for developing eugenics policies that are falsely promoted as public health measures in nations that lack a strong history of protecting human rights.(170) In fact, a number of nations, including China(171) and Singapore,(172) have launched eugenics programs prohibiting marriage or requiring sterilization of certain categories of persons considered of degenerate or inferior quality.(173)


1. National and Subnational Legislation

Societies and legal systems are increasingly challenged not only by the scope of genetics developments, but also by the speed with which they have taken place. The vast majority of developing nations have yet to develop any legislation addressing the potential problems posed by genetics.(174) Legislative developments, even in industrialized states that have enacted laws governing prospective HGP problems, are haphazard and limited at best.(175)

Most industrialized nations have begun to promulgate laws or adopt constitutional amendments to protect human rights and public health in light of the widespread implications of the HGP, and sub-national legislation is increasingly commonplace in such nations, including the U.S.(176) Although the U.S. and other industrialized countries have devoted substantial sums to considering the broad ethical and legal implications of the HGP, most of these nations have been ineffective in addressing the issues comprehensively, essentially adopting an ad hoc approach to specific genetics issues such as privacy in genetic information, counseling and prenatal diagnosis.(177) For example, the U.S. has not developed any comprehensive legislation addressing issues of genetic privacy.(178)

The difficulties of responding to the fast pace of genetic science through existing legislative bodies and courts has led a number of industrialized countries to establish bioethics institutions, with statutory or practical independence from existing administrative structures. …

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