The Evolution of Human Rights in the Age of Biotechnology

 

John Paul Ryan and Benjamin Hron

In February 1997, Dr. Ian Wilmut introduced the world to the first successfully cloned mammal, a sheep named Dolly, drawing widespread attention to the rapid advances being made in the field of biotechnology. The result of this expansion of scientific horizons will be unprecedented knowledge of the building blocks of human life and how to manipulate them. The implications of these developments have been a growing concern of scientists, industry, governments and international organizations for years. More recently, they have also become the subject of much public attention.

In evaluating the issues raised by biotechnology, a balanced approach is essential. Biotechnology has potential benefits to offer, and should not be viewed simply in terms of the difficult issues that it raises. Its future will be determined by how well national governments and international organizations are able to regulate the application of the technology so as to maximize its benefits and minimize its problems.

The biotechnology debate covers a vast range of issues. Biotechnology invites us to re-examine concerns ranging from reproductive technology to the rights of those indigenous peoples whose genetic samples are used in biotechnological research. It also creates new areas of human rights discussions with far-reaching implications for future generations, dealing with such processes as germ-line manipulation (altering the genes in egg, sperm, or embryo cells to change characteristics of the developing fetus), and genetic screening (using genes to test for genetic disease and genetically influenced traits).

In this article, we examine some of the main issues and developments with which legislators must grapple, and suggest how these can be studied in the social studies classroom.

 

Global Biotechnology

As defined by the National Science and Technology Council in 1995, the term biotechnology refers to “a set of powerful tools that employ living organisms (or parts of organisms) to make or modify products, improve plants or animals, or develop microorganisms for specific uses.”1

The primary development of biotechnology is occurring in three places: the European Union (EU), an economic and political cooperative among 15 European nations; the United States; and Japan. These areas represent both the largest developers of biotechnology and its largest markets.2 Not surprisingly, the biotech industry has created a bridge between pharmaceutical companies and scientific research institutions, primarily universities. The relationship between industry and academia is essential because much of the research and development of new technology is done at institutions of higher education.

The United States leads in basic research because its universities are subject to fewer government regulations than universities in Japan and most of Europe. Japan excels at applied research because of the long-term approach to research taken by Japanese companies, as well as their openness to broader applications of technology.3 The European Union has lagged behind both the United States and Japan in biotechnology development,4 but leads in the creation of biotechnology regulations.

The EU has implemented directives on the release into the environment of genetically modified organisms (naturally occurring plants or animals whose genetic material has been altered to give the organisms a desired characteristic they do not naturally possess) and placed strong restrictions on the patenting of life forms. More importantly, the EU has done at the regional level what the United Nations must do at a global level: resolve differences among many nations and develop a universally acceptable method of regulating biotechnology.

 

Potential Benefits of Biotechnology

Biotechnology offers humans a vastly increased understanding of the basic components of life. The mapping of the human genome (the full collection of genes in a human being) undertaken by the Human Genome Project is expected to reach completion in the early part of the next millennium.5 Once completed, every one of the roughly 100,000 genes in human DNA will be identified.

Unlike many other scientific “advances,” biotechnology has the potential to directly shape the future of life on earth through the direct manipulation of genes. It has already been used to add extra nutrition and flavor to everyday foods, to alter microorganisms used in cleaning up oil spills and recycling rubber, and to create a more effective detergent for clothes.

It is in the field of medicine, however, that most people will be affected by the advances of biotechnology. Microorganisms have already been genetically altered to produce proteins used in human pharmaceuticals, and the direct manipulation of human genes may not be far in the future. Germ-line manipulation (GLM) offers the prospect of eliminating many genetic defects that may be life threatening or life impairing. Genetic screening enables doctors to determine whether a person will develop or be a carrier of a hereditary genetic defect. At present these defects cannot be altered, but with new GLM techniques, doctors will someday be able to offer parents the possibility of replacing defective genes with healthy working copies.6

Future medical advances are not limited to the manipulation of microorganisms and the human genome. Biotechnology may soon produce animals genetically altered to develop organs for human transplants and to produce compounds in blood or milk that can be harvested and used in human medications. The Roslin Laboratory in Scotland, where Dolly was cloned, successfully added a human gene to another cloned lamb, Polly, born in July 1997, and hopes to develop mechanisms to turn animals into living pharmaceutical factories.7

 

Potential Misuses of Biotechnology

Although much of the recent focus on human rights and biotechnology concerns research methods, there is growing concern about the potentially harmful uses of this technology. When the United Nations proclaimed the Universal Declaration of Human Rights (UDHR) in 1948, the world was still reeling from World War II. The unprecedented scale of atrocities committed during the war strongly influenced the Declaration. Some of the modern concerns about biotechnology recall those raised by the Nuremberg trials with regard to the Nazi pursuit of a “master race.” Others focus on genetic discrimination and violations of the right to privacy.

The Dolly announcement of 1997 was followed by an intense public debate stimulated by fears about human cloning and eugenics. The term eugenics, coined by scientist Francis Galton in 1883, refers to the idea that because many human traits are genetically inherited, selective breeding could produce a superior human species.8 Once widely discredited for its racist implications, eugenics is taking on new life in the era of biotechnology. Using the techniques of germ-line manipulation and genetic screening, for example, it is possible to do much more than fix life-threatening and life-impairing diseases. Genes for height, eye color, skin color—and perhaps even temperament, intelligence, and sexual orientation—might be manipulated to eliminate characteristics deemed undesirable by individuals or groups in society.9

Beyond creating a new aspect to the wealth gap based on who can and cannot afford to manufacture the “perfect child,” eugenics promises to dilute the genetic diversity of the human species. It is important to keep in mind that changes in germ cells (reproductive cells) are inheritable and would affect not only a particular child but all his or her descendants. Although every parent’s “ideal child” would be different, the similarities among them would dull the gene pool over time. The implications of this go beyond lack of physical or even psychological diversity, to the problems inherent in a more generalized dwindling of genetic diversity. New genetic combinations and genetic mutations are evolutionary mechanisms of survival; simply put, eugenics would limit the ability of the human species to adapt.

While human cloning and eugenics remain on the horizon for now, the possibilities of genetic discrimination and invasion of privacy are more pressing. The mapping of the human genome, combined with further advances in genetic screening, has the potential to do more harm than good. Scientists may soon be able to determine critical information about a person before birth.

Two areas in which potential discrimination are a possibility are health and intelligence. With genetic screening, an individua#146;s susceptibility to disease and predicted life expectancy could be determined as easily as eye color or gender. Schools, employers and insurance companies could all use such information to favor the genetically “gifted.” The possibilities for discrimination are significant, as are the privacy issues involved. Even if the government outlaws the use of genetic screening, it would be impossible to prevent samples from being obtained and tested. Because almost every cell in the body contains a complete set of genes, a routine blood test could be used to obtain information that individuals would never volunteer.

 

Rights of Indigenous Peoples

Human rights concerns arise from both research methods and the potential misuse of its application. Biotechnology research and development rely upon the accumulation of genetic samples. Because these samples may be obtained in the process of routine medical examinations, questions arise about the informed consent of the sample donors, particularly with respect to indigenous peoples. Indigenous peoples are defined as traditional groups whose ancestors inhabited a territory before people of a different ethnic origin came to dominate it.10 Most of the world’s indigenous peoples live in developing nations.

Over time, exposure to diseases can give rise to acquired genetic immunity. Inhabitants of developing countries often have natural defenses against diseases that inhabitants of developed nations do not, and vice versa. Researchers want access to genetic samples from indigenous peoples, whose genes have remained isolated, in order to learn more about what genes cause these differences.

Many people worry that companies will exploit indigenous peoples by obtaining samples for research without informed consent and then failing to share the benefits of resulting breakthroughs. It is now recognized that indigenous peoples must be allowed to decide whether or not they will be participants in genetic research. Yet can informed consent be given when people may not understand the nature, purpose, or potential consequences of genetic research and technology?

In some cases, indigenous groups may consent to research but have strong moral objections to the industrial aspects of biotechnology. In particular, many groups object to the patenting of genes, something acceptable in one form or another in many developed nations, including the United States, Japan, and the European Union.11

 

UN Research Guidelines

Three recent UN agreements address human rights concerns stemming from research in biotechnology.

The UN Convention on Biological Diversity, which took effect in 1993, underlines the importance of conserving biodiversity, including human genetic diversity. The convention provides guidelines for the relationship between developed and developing nations with regard to biotechnological research. Under the convention, developed and developing nations essentially agree to a trade of technology for access to natural resources.12 Although the convention primarily concerns access to nonhuman natural resources, the principle of exchanging these resources for technology sets a precedent for compensating donors.

Guidelines for biotechnology research have also been developed by the International Bioethics Committee (IBC), created by the UN Educational, Scientific, and Cultural Organization (UNESCO) in 1992 to draft an international agreement on the protection of the human genome.13 The result is the Universal Declaration on the Human Genome and Human Rights, which considers the human genome to be part of the “common heritage of humanity.”14 The declaration addresses aspects of research on the human genome, the rights of researchers and subjects, the duties of states toward their citizens, and international cooperation among developed and developing nations. It also contains measures for implementation, calling upon states to promote the principles it outlines through education and information dissemination and by forming ethics committees.15 The declaration also gives the IBC the task of identifying practices contrary to human dignity and making recommendations to UNESCO.16

The declaration recognizes the need for human genetic diversity and discusses the universal effects of biotechnology as well as the effects of genetic reductionism, noting environmental, social and other factors affecting human development. Reductionism is recognized as promoting the growing fears of, and potential problems with, genetic testing and germ-line manipulation, and to this end, eugenics is strictly regulated.17 The declaration also extends to genetics the human rights to privacy and freedom from discrimination promised by the Universal Declaration of Human Rights.18 Underlying the declaration’s approach is the implied recognition of “an intrinsic right of human biodiversity.”19

The declaration’s most significant omission is its failure to discuss the rights of future generations. In question is the conflict between the right to benefit from science and the right to an unaltered genome.20 The first right is explicitly part of the Universal Declaration of Human Rights, while the second right can be derived from several articles of the UDHR. Article 3 recognizes the right to “life, liberty and security of person.” Article 12 recognizes that “no one shall be subjected to arbitrary interference with his privacy … .” Article 22 recognizes the right to the realization of the “free development of his personality.” Article 30 states the right to be free from state or personal interference in a person’s rights or freedoms.

Taken together, a case can be made that the manipulation of a child’s genome beyond correcting for serious potential medical problems is a violation of the future child’s rights. The debate over the rights of the unborn child clearly mirrors the abortion debate. However, as mentioned earlier, because of the heritability aspect in germ-line manipulation, the rights in question are not just those of the child, but also those of his or her descendants.

The rights of indigenous peoples are addressed in greater detail in the UN Draft Declaration on the Rights of Indigenous Peoples, developed by a subcommittee of the UN Commission on Human Rights. The draft, expected to be adopted by 2004, gives special protection to the genetic resources of indigenous peoples, and acknowledges their right to protect their property and to receive compensation for property taken without consent.21 The declaration extends further to protect all subjects involved in biotechnology research.

 

Conclusion

In recent years, the UN has begun to address many of the hard questions raised by biotechnology. Although the focus in this article has been on human rights, the UN has also taken steps to regulate other potentially harmful aspects of biotechnology, particularly those involving damage to the ecosystem. Although room for further regulation certainly exists, it must be balanced carefully with the possibility of stifling the potential benefits of this new technology.

The potential harm of germ-line manipulation and genetic screening justify continued suspicion of these advances in technology. However, rather than ban their uses outright, as some human rights, religious and anti-abortion groups have advocated, the UN must continue to study them in order to develop regulations that accurately reflect their pros and cons. In its attitude to biotechnology as a whole, the UN must also continue to redefine human rights in terms of the evolving technology. Although the rights of indigenous peoples have been a focal point of early human rights concerns, the Universal Declaration on the Human Genome and Human Rights accurately points out that biotechnology will affect all humanity.

 

Notes

1. National Science and Technology Council, “Biotechnology for the 21st Century: New Horizons,” Available on the web at http://www.nal.usda.gov/bic/bio21/intro.html#preface (1999, July 22).

2. John Ashworth, “Development of the European Biotechnology Industry,” California Western Law Review 33 (1996): 83–99.

3. Brian C. Cunningham and Joyce C. Chow, “The Biotechnology Industry in Japan: A Framework for Entry,” Journal of Proprietary Rights 4 (July 1992): 13–17.

4. Valerie Szczepanik, “Regulation of Biotechnology in the European Community,” Law and Policy in International Business 24 (Winter 1993): 617–646.

5. See the Human Genome Project website at www.mcet.edu/genome/

6. Maha F. Munayyer, “Genetic Testing and Germ-Line Manipulation: Constructing a New Language for International Human Rights,” American University Journal of International Law and Policy 12 (1997): 687–731.

7 Emily Marden, “The Revolution Ignored,” New York University Environmental Law Journal 6 (1998): 674–687.

8. Bernie Devlin, et al., ed., Intelligence, Genes, & Success (New York: Springer-Verlag, 1997).

9. Munayyer.

10. This definition is by the UN Human Rights Commission.

11. Kara H. Ching, “Indigenous Self-determination in an Age of Genetic Patenting: Recognizing an Emerging Human Rights Norm,” Fordham Law Review 66 (November 1997): 687–730.

12. Catherine J. Tinker, “Introduction to Biological Diversity: Law, Institutions, and Science,” Buffalo Journal of International Law 1 (Spring 1994): 1–25.

13. Noelle Lenoir, “French, European, and International Legislation on Bioethics,” Suffolk University Law Review 27 (Winter 1993): 1249–1270.

14. Sonia Le Bris, et al., “International Bioethics, Human Genetics, and Normativity,” Houston Law Review 33 (1997): 1363–1395.

15. Ibid.

16. See the IBC link to the UNESCO website at www.unesco.org/ibc/uk/genome/projet/index.html

17. Ibid.

18. Le Bris et al.

19. Munayyer.

20. Ibid.

21. Ching.

 

John Paul Ryan is Director of School Programs for the ABA Division for Public Education in Chicago. Benjamin Hron, a biology and political science senior at Carleton College in Northfield, Minn., served as a summer intern in the ABA’s Division for Public Education.

This article has been adapted from the American Bar Association Division for Public Education, Update on Law-Related Education 22:3 (Fall 1998): 14-17.

 

Universal Declaration on the Human Genome and Human Rights

 

The Universal Declaration on the Human Genome and Human Rights proclaims the set of some 100,000 genes that determine human heredity to be a “common heritage of humanit.y.” It also declares the principles it sets forth to be based on “recognition of the inherent dignity and of the equal and inalienable rights of all members of the human family” enunciated in the Preamble to the Universal Declaration of Human Rights. The declaration’s seven chapters cover areas such as research on the human genome; conditions for the exercise of scientific activity; the rights of persons concerned; and the duty of states to show solidarity toward individuals, families, and population groups particularly vulnerable to genetic diseases. It further commits states to fostering the international dissemination of scientific knowledge on the genome, and to cooperation on the subject between industrialized and developing countries. See the full text of the declaration at www.unesco.org/ibc/uk/genome/projet/index.html.

 

 

Glossary of Terms

 

bioethics: the branch of ethics, philosophy, and social commentary that discusses the life sciences and their potential impact on society

biotechnology: a set of powerful tools that employ living organisms (or parts of organisms) to make or modify products, improve plants or animals, or develop microorganisms for specific uses

cloning: the process through which a cell is replicated to produce another genetically identical cell

eugenics: the concept of improving the genetic constitution of the human species through selective breeding

genetic engineering: research techniques that manipulate the DNA (genetic material) of cells in order to change hereditary traits or produce biological products

genetic reductionism: a term used for the idea that genes account for all, or almost all, of an organism’s characteristics, and explain social behavior.

genetic screening: using genes to test for genetic disease and other genetically influenced traits

genetically modified organism: a naturally occurring plant or animal whose genetic material has been altered to give it a desired characteristic it did not naturally possess

germ cell: a reproductive cell (egg or sperm) or a cell that will develop into a reproductive cell

germ-line manipulation: altering the genes in egg, sperm, or embryo cells to alter characteristics of the developing fetus

human genome: the full collection of genes in a human being

indigenous peoples: traditional peoples whose ancestors inhabited a territory before people of a different ethnic origin came to dominate it

patent: a Federal registration giving an inventor exclusive rights to make, use, or sell his invention for a term of years

privacy: as a right, to be free from interference with one’s private affairs

stem cell: an unspecialized and usually embryonic blood cell capable of reproducing and differentiating to make all varieties of mature blood cells

 

 

Teaching Ideas and Activities

 

Hilary Glazer and Hannah Leiterman

1. Provide students with the accompanying article on “The Evolution of Human Rights in the Age of Biotechnology” as background. Divide students into groups to research four topics involving biotechnology and human rights. Students will find the websites listed below useful for their research. Each group should develop and present to the class a short paper outlining the human rights issues involved in the topic they research. These papers should form the basis for a class discussion on the problem of balancing society’s need for scientific development with possible threats to human rights..

2. Lead students in a discussion of what role the United Nations should have in regulating biotechnological research and development so that the rights of individuals in developing countries are not violated. Have students draft letters to the UN Commission on Human Rights or the UN Educational, Scientific, and Cultural Organization (UNESCO) arguing for the single individual right they feel is the most important to consider when dealing with these issues.

Ask students to look through print and online newspapers for articles about recent legal issues that involve biotechnology. Two great online resources are the New York Times Cyber Law Journal (published every Friday online at www.nytimes.com/library/tech/reference/indexcyberlaw.html) and the search engine at the Thomas website [thomas.loc.gov/]. Students might keep a record of such developments on a bulletin board or in a class notebook throughout the year.

 

 

Web Resources

The following websites relate to issues involving biotechnology and human rights. Many are accessible from a
page called Genetics & Ethics, which houses a large selection of links
including Genetics and the Law, General Bioethics Resources, and Biotech$ology & Biodiversity Resources at: www.ethics.ubc.ca/brynw/index.html

 

Access Excellence Genentech

http://www.gene.com/ae/

This site is an online cornucopia for teaching and learning about biology. Its Biotech category includes a new page titled Biotech Chronicles featuring articles on the history of biotech, biographies of biotech pioneers, the scientific method, and timelines.

 

Bio Online

bio.com/resedu/educate.html

A listing of annotated Education Resource links for biotech and biology sites.

 

Eugenics

homepages.tig.com.au/~kalon/eugenics/frame1.html

Created by students at the University of New South Wales in Sydney, Australia, this site features a good overview of eugenics, including its history and arguments in the ongoing moral, legal, and economic debates over it.

 

The Genetic Privacy Act and Commentary

www.ornl.gov/TechResources/Human_Genome/resource/privacy/privacy1.html

Describes the 1995 proposal for federal legislation guaranteeing the protection of genetic privacy while permitting medical uses of genetic analysis, legitimate research in genetics, genetic analysis for medical uses, and genetic analysis for identification purposes. Very informative.

 

 

Human Genome Diversity Project (FAQ)

www.stanford.edu/group/morrinst/hgdp/faq.html

Housed at Stanford University’s Morrison Institute site, this Frequently Asked Questions page is a good resource for learning what the HGDP is, how its data is collected, the prospects for cloning humans, and the possibility of creating biological weapons.

 

The Human Genome Project

www.mcet.edu/genome/

Created by the Massachusetts Corporation for Educational Telecommunications (MCET), this site is designed to educate students, teachers, and the general public about the ethical, legal, and social implications of genetic research. The site includes some interactive areas for students in grades 9-12 as well as a resource center with ideas, articles, handouts, and transparencies for teachers.

The “Issues and Ethics” section of the Human Genome Project website [www.mcet.edu/genome/issuesandethics/] offers similar articles and activities aimed to broaden high school students’ critical thinking about topics involving biotechnology and human rights. The articles are updated with new topics approximately every other month.

 

“Science Races Ahead of the Law in Genetic Testing”

www.goldrich.com/frame/health.html

Lee S. Goldsmith, who is a lawyer and a doctor, wrote this article addressing genetic information and the law, and citing two cases pertaining to medical insurance companies that denied coverage to patients. The article first appeared in the New Jersey Law Journal.

 

Hilary Glazer and Hannah Leiterman are editors in the ABA Division for Public Education.

 

 

Bioethics and the Law

Elizabeth M. Yang

Each scientific breakthrough in the field of biotechnology necessitates a reassessment of current law and policies. The following are some of the major current issues.

 

Patenting Genes

Patents are a necessary legal protection against the infringement of an individua#146;s original work product. The right of scientific researchers to obtain patents is an ackowledgement of the need for some protection for the great amounts of time, expertise, and money invested in research. But, some argue, the other and more important side of the issue is the loss of freedom by other researchers to study and advance the field when knowledge is patented.

Will legal protection of patents hinder further advances in biotechnology? Specifically, will the licensing costs charged by holders of patents create an atmosphere that is monetarily prohibitive for smaller firms and individuals conducting necessary, cutting-edge research? Geneticists at Washington University in St. Louis and the Sanger Centre in Cambridge, England, protested this type of genetic patenting by posting a large stretch of chromosome 13 of the human genome on the Internet for other researchers to use without charge.

The patenting of genetic material has further led to a great moral discussion. For example, some religious leaders are concerned about issues raised by patenting for genetic engineering purposes. Do individuals have a right to patent life forms? Is it ethical to assign commercial rights to such life forms as human genes, blood cells, or viruses?

 

Genetic Testing

Genetic testing creates another area of moral and legal concerns. How might its findings affect the individual tested? Will they enable employers and insurance companies to discriminate? And, when adverse information is discovered, is there a duty to inform others?

For example, genetic testing is currently available for a number of common genetically based diseases and adult-onset disorders, including sickle cell disease, cystic fibrosis, Duchenne’s muscular dystrophy, Alzheimer’s disease, Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig’s Disease), Huntington’s disease, and multiple sclerosis. Alzheimer’s disease is an inherited adult-onset disorder. Genetic testing does not reveal a specific gene as a cause or carrier of the disorder, but only an individua#146;s risk factor. There is currently no cure for Alzheimer’s disease, and thus the benefits of learning about a possible disposition may be questionable to many.

The risk of genetic discrimination in employment and insurance situations grows with each advance in genetic testing. As individuals and organizations struggle to deal with the emerging issues, so is Congress. During the 105th Congress, 50 bills were introduced in the House and Senate addressing genetic information issues. As of this writing, the Genetic Information Nondiscrimination in Health Insurance Act of 1999 has been introduced in both houses during the 106th Congress, but it has not yet been passed in the Senate or the House.

 

Genetic Fingerprinting

Genetic tests can now be used to identify individuals through a process that either definitively includes or excludes them from a sample. In rape cases, for example, potential suspects can be ruled out if their DNA does not fall into the same category as the DNA present in the victim’s sample—in some cases, even years later. DNA testing has also been used outside the criminal justice arena—for example, in determining biological fatherhood in paternity cases. But Fourth Amendment rights against unreasonable search and seizure must be weighed against the ability to gain such knowledge. For example, the ease of submission to such testing must be weighed against the implications of refusal to submit, and questions surrounding the compilation of such information into private or national data banks as a result of involuntary or voluntary collection must also be addressed.

DNA sampling as a means of identifying individuals is a concept that does not sit easily with many people. Several state and local governments are trying to require the collection of DNA as a routine procedure for arrest, along with mug shots and fingerprinting. The Department of Justice recently created a special commission to discuss whether people who have been arrested, but not convicted, should be required to submit to such sampling.

While involuntary collection of genetic information is naturally an area of contention, there are issues surrounding its voluntary collection as well. The Florida Department of Law Enforcement’s offer to provide three school districts with DNA sampling kits for their students as a means of providing positive identification was met with much hesitance and protest. The procedure involved each child giving blood in the presence of a parent, and a drop of blood being sealed on a special chemical paper that in turn was given to the parent. The government did not retain the sample. Nonetheless, many parents and two school districts did not participate in the program, citing privacy and liability issues as reasons.

 

Elizabeth M. Yang is associate director of the ABA Division for Public Services in Washington, D.C. She has served as staff director of the ABA Coordinating Group on Bioethics and the Law.

 

Human Rights Issues in Biotechnology: A Position Paper

Ami S. Jaeger

The single most poignant and troubling issue in biotechnology is the ownership and use of human DNA found in blood, tissues, and reproductive materials. Because samples of human DNA are crucial to biotechnological research and development, human DNA has become a commodity with high value in the marketplace. Just a couple years ago, for example, tissue was considered “waste”; now it is a profitable treasure trove. As a result of the commodification of DNA, some key issues facing biotechnological research are: (1) the responsibilities of those who use DNA to develop commercial products; (2) the practice of bioprospecting in developing countries by researchers who are searching for novel gene sequences in indigenous plants, animals, and humans; (3) profiteering by researchers and physicians; and (4) insensitivity toward those persons and family members from whom tissues are obtained.

 

Impact on the Individual

There are two troubling aspects of the commodification of human DNA. The first is its impact on the individual. Take the individuals who participate in genetic research by providing DNA. Should they be considered voluntary contributors to DNA research databanks, or human subjects who receive benefits at a level equal to or greater than the companies, universities, and researchers who are conducting the research? Generally, research participants are not paid for their participation in research, on the rationale that doing so might coerce that participation. They are given either “free drugs” (if the protocol is investigating drugs) or “free doctor visits.” Sometimes they receive $5 to $300 to cover transportation expenses. Participants are usually not offered a percentage of profits from products or discoveries derived from their DNA or immortalized cell lines.

Even more troubling, many times participants are not asked for permission, nor are they even told that their DNA or tissue will be used in further research or patented. In Moore v. Regents of the University of California, 793 P.2d 479 (Cal.1990), for example, the California Supreme Court held that, in cases where doctors or researchers may benefit financially from the use of patient samples for genetic research, informed consent requires them to reveal this interest to the patient. The California court, however, rejected the patient’s claim for a percentage of the profits resulting from the research. The failure to obtain informed consent for any use of DNA or tissue, including “anonymous” use, violates individual, cultural, religious, and group rights. Given the vast amount of money invested in biotechnology discoveries (both from public funds and private resources), the numerous patents held by biotechnology companies and universities, and the actual and estimated financial gain of companies and universities, there is a need to honor the human rights of individual participants in genetic research. One way to show respect for those who made the discoveries possible is to include them in the profit and benefit payout.

 

Indifference to DNA Use

The second troubling aspect of the trend toward commodification is a broad social indifference to the use of DNA and reproductive materials in biotechnology research and products. DNA, blood, tissue, placentas, umbilical cord blood, bone marrow, gametes, and embryos carry both personal and social meaning. Even when separated from the body, blood or DNA can identify an individual or may provide health information or diagnoses, while embryos (considered by some to be children) represent the potential of life.

DNA research, stem-cell research, and other medical research have been conducted in a cavalier manner. In our rush to seek treatment and cures, we risk turning our eyes away from ethical questions that go to the heart of our understanding of life itself. For example, in response to a query from the Director of the National Institutes of Health, the Office of the General Counsel of the Department of Health and Human Services recently issued a legal opinion stating that embryonic stem cells are not embryos but human cells and are thus exempt from the federal prohibition on embryo research. This is, in my opinion, a misuse of the law that blurs important social and ethical considerations. Embryonic stem cells are distinct from adult stem cells—hence their scientific and therapeutic value. Research using human embryos is appropriate if ethical guidelines, developed through open discussion, are in place and followed. To construct a legal fiction or an “ethica#148; position that forwards a political end does not serve science or society in the long run.

Social and commercial views toward DNA and tissue will change as genetic learning progresses. At present, too ardent an embrace of biotechnology could result in humanity being defined as little more than our DNA. Genetic science does not have a lock on the clues about who we are as humans, nor does it point to the most important dimensions of our essential humanity that go beyond our DNA. Our enthusiasm for medical treatments and cures cannot absolve us of our social responsibility to act ethically and to strive for a just society.

 

Ami S. Jaeger, J.D., a principal with the BioLaw Group, LLC, in Santa Fe, N.M., is co-chair of the ABA Committee on the Laws of Reproductive and Genetic Technology and a member of the ABA Committee on Regulating Research (CORR) in Chicago.

Use the Web to Form Your Opinion!

Read and discuss the position paper by Ami S. Jaeger. Look up the meaning of any terms you do not understand. Then build arguments for or against the issues raised in this position paper. The following websites contain information about these issues.

 

American Society for Reproductive Medicine

www.asrm.org/current/press/stem.html

A press release from this society’s site makes the argument that embryonic stem cell research is a necessity, and touches on the funding issues surrounding this research.

 

Stem Cells–A Source of Organ Transplants

www.geneletter.org/0299/HumanEmbryonicStemCells.htm

www.geneletter.org/0299/

The first link, an article from the February 1999 online issue of Gene Letter, examines the ethical and legal issues of research on embryonic stem cells; its slant seems to be in direct opposition to the positions taken up by Jaeger. The second link offers more information about the topic.

 

A Stem Cell Go-Ahead

www.usnews.com/usnews/issue/990201/1nih.htm

This article from U.S. News & World Report focuses on the legal review of using stem cells in research and concludes that most ethicists don’t find the issue troubling.

 

The Human Genome Project

www.ornl.gov/TechResources/Human_Genome/home.html

This informational site about the Human Genome Project has links that include “The Genetic Privacy Act and Commentary” listed below.

 

The Genetic Privacy Act and Commentary

www.ornl.gov/TechResources/Human_Genome/resource/privacy/privacy1.html#intro

Section II describes the collection and analysis of DNA samples.

 

The Patenting of Human Genetic Material

www.rafi.ca/communique/fltxt/19941.html

Located on the site of Rural Advancement Foundation International (RAFI), this issue of RAFI’s Communiqué offers a brief introduction to human genetic patenting in a broad context. It also focuses on the international controversy arising from claims of monopoly control over cell lines.

 

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