The Genetic Bill of Rights
Advancing a Rights Platform in Biotechnology
by Sheldon Krimsky and Peter Shorett
The Council for Responsible Genetics is pleased to announce the release of Rights and Liberties in the Biotech Age (Roman and Littlefield, 2005), an original volume essays by leading scientists, policy experts and public interest advocates on the impact of genetic technologies on our individual and collective rights. The following is an excerpt from the introduction.
During the past quarter century the engine of biotechnology has raced through industrial and agrarian economies like a freight train without brakes to slow it down or an engineer to steer it. The very thought of having social controls over its applications has been met by its most ardent promoters with cries of “let the free market decide.” According to this view, the only justification for putting brakes on a technology would be a product that introduces a clear and present danger to human health or national security.
Biotechnology is affecting broad sectors of the economy, including agriculture, healthcare, pharmaceuticals, the fertility industry, natural resources, material science, and forensics. For this reason, we may view biotechnology, which includes genetic and cellular engineering, as a major technological revolution. Historically, such revolutions have brought changes to society, sometimes for the better and sometimes for the worse. But we have never had a technological or political revolution that has not been accompanied by some fundamental adjustments to and controls of the forces of change. The major difference in our varied responses to technological or political change is whether we adapt to them by default or whether we make a conscious effort to take control over the possibilities.
Let us imagine a not-too-distant future when there are no state or international controls over developments in biotechnology. What outcomes might we expect? What violations of civil liberty or minority rights would be likely? Consider the following possible cases:
A witness to a crime identifies a young indigent male out of a lineup as the person who allegedly raped and murdered a young woman. A jury sentences the prime suspect to death by lethal injection. After six years of appeals, the courts uphold the sentence and the convicted felon is put to death. Subsequent to his execution, a legal team discovers that a DNA test could have proven that the wrong person was tried and convicted for the crime. But such a test was not made available to the convicted felon for lack of funds in the state budget.
In another case, the father of a young woman is diagnosed with Huntington’s disease, an incurable and untreatable degenerative neurological disorder. The young woman has a 50 percent probability of contracting the disease later in life. She decides not to take the test to determine if she is carrying the Huntington’s gene. Based on the uncertainty of her medical condition, her health insurer doubles her premium while her life insurance company places her in a high risk pool, making her insurance costs prohibitively high.
In a third case, the Organic Food Growers Association can no longer assure consumers that organic produce will be free from contamination from genetically modified strains. The reason for this is that the buffer zones that were supposed to be set up between genetically modified crops and organic crops have not been effective in preventing the contamination of organic farms. Consumers concerned about the possible spread of food allergens from mixing genes across animal and plant species or about changes in nutrient value of genetically modified crops can no longer depend on the organic label for protection.
These entirely plausible cases call out for protections against the misuse or neglectful use of new genetic technologies. This book is based on the idea that societies need a genetic bill of rights to protect the liberties, values, and interests of people against a technology that is out of control. Biotech companies are introducing untested and unlabeled genetically modified food into the marketplace. Young couples planning to have children are barraged by a multitude of new genetic tests, the consequences and value of which are not fully understood. Thousands of synthetic chemicals are exposing humans to genetic and chromosomal damage, contributing to cancer and developmental disorders. Government and state agencies are finding ways to gather DNA identification data from larger segments of the population, with little concern for personal privacy. Indigenous people throughout the world are fighting multinational corporations’ attempts to patent the germ plasm of their native plants and animals and their own DNA. This volume seeks to raise awareness about new genetic technologies and products that companies are introducing into the marketplace despite a widespread lack of understanding of their implications.
At the turn of the new millennium, twelve members of the board of directors of the Council for Responsible Genetics (CRG), a twenty-one-year old public interest organization dedicated to exploring the societal implications of the new genetic technologies, voted to approve ten principles that they called the Genetic Bill of Rights. The CRG’s purpose in framing these ten principles was to emphasize the link between unchecked genetic technologies and the erosion of human rights. Only a set of formal principles could properly challenge the forces of change.
There are several reasons for adopting a rights agenda to protect people from abuses resulting from genetic technologies. The first consideration takes us back to the American Bill of Rights, which was added in a series of amendments to the U.S. Constitution. When the British monarchy’s rule was overthrown by the American colonists, the band of revolutionary dissidents we call “our founding fathers” formed a representative government and created the Bill of Rights to protect citizens against the tyranny of the majority. While framers of the Constitution worked out the checks and balances within the structure of government, until they adopted the Bill of Rights there was no brake against an overzealous state prepared to sacrifice individual liberties.
Of course, each of the principles in the American Bill of Rights is limited. For example, Article IV, which secures individuals the right to be free of unwarranted government search and seizure, is not absolute. The courts have upheld involuntary searches of individuals by police and federal authorities when a suspect is believed to have committed a crime or is believed to be preparing to commit a crime. The Bill of Rights does not explicitly protect other intrusions into private affairs although the courts have found that a combination of the First, Fourth, and Fifth Amendments can be interpreted to protect certain zones of privacy.
But the adoption of a “right” establishes a burden of proof. Those who wish to violate the right must demonstrate a compelling governmental interest, such as probable cause in the case of an intrusive search or the disclosure of personal medical information, or a clear and present danger in the case of restrictions on free speech. This is why a rights approach to protecting liberties is so vital. It stands in stark contrast to debates over legislation in which those who advance a new law or regulation are merely required to justify its passage against the burdens imposed by its implementation, including its interference with free markets. In such policy decisions, fundamental rights take a back seat to the logic of cost-benefit analysis. Too often, losses that defy easy measurement are not even considered.
The American Bill of Rights is designed to protect individuals—their property, their speech, their right to worship, their right to self-protection, and their right to a fair and speedy trial. It makes no reference to the rights of common ownership, protection of public resources, or the collective public good. A different model of rights doctrines, with which the Genetic Bill of Rights (GBR) shares some characteristics, can be found in the Universal Declaration of Human Rights passed by the United Nations in 1948. Some of these rights are individual in nature, such as Article 5 (“No one shall be subjected to torture or to cruel, inhumane or degrading treatment of punishment”) or Article 13 (“Everyone has the right to freedom of movement and residence within the boundary of each state”).
But in addition to such rights, there are other rights in the UN Declaration that depend on a collective public purpose. For example, consider Article 15 (“Everyone has a right to a nationality”) and Article 25 (“Everyone has a right to a standard of living adequate for the health and well-being of himself and his family”). These rights are not about preventing the state from inhibiting people to speak, act, or hold property, nor are they about interfering in one’s privacy, or what we usually understand as protections against encroachment on individual freedom. Another set of rights illustrated by the UN Declaration imposes on the state an obligation to ensure the well-being of citizens, such as Article 26 (“Everyone has the right to education”). These rights are part of the commonweal function of government. The right to an education or an adequate standard of living, including health care, demands a proactive state role.
When nuclear power was unleashed, international organizations sponsored treaties on the safe uses of atomic energy. Similarly, after scientists recognized that there was a connection between chlorofluorocarbons and upper stratospheric ozone depletion, social movements helped to create an international agreement banning ozone-destroying chemicals. These treaties established a transnational agenda to protect current and future generations from the misuse of particular technologies and their despoliation of the global commons. Whether because of political, economic, scientific, or technological change, progressive communities have on numerous occasions organized themselves to counteract the threat to communitarian interests.
We can refer to these as collective rights because they depend on the role of governments to provide the social, economic, or environmental conditions that enable people to achieve a decent quality of life. Collective rights go beyond the role of the state in preventing a transgression of people’s basic liberties of free speech, association, and trial by jury. Thus, the Americans with Disabilities Act gave disabled Americans new entitlements that were not afforded to them in the Bill of Rights such as wheelchair access to public facilities. Although all rights depend on government action for their implementation, the protection of collective rights often involves an emphasis on public goods, greater allocation of state resources, and international cooperation.
In its statement of principles, the Genetic Bill of Rights (GBR) consists both of individual and collective rights. The first article of the GBR affirms that people have a right to the preservation of the earth’s biological and genetic diversity. This is a transnational right that each person can claim and a duty that all governments collectively share. Articles 2, 3, 4, 5, and 10, covering patented entities, genetically modified food, the management of biological resources, the protection from toxins, and the prohibition against prenatal genetic manipulation are collective rights in that they refer to collective goods (the global genetic commons, the integrity of the food supply, a clean environment free of toxic substances), the preservation of which requires coordination among individuals, states and the market. These rights also speak to a cultural ethos or an international principle of justice that has less to do with personal liberties and the inalienable rights of individuals and more to do with communitarian values. The sixth through ninth articles of the GBR, covering eugenics, genetic privacy, genetic discrimination, and DNA tests, follow in the civil liberties tradition of the American Bill of Rights.
The framework for the Genetic Bill of Rights grew out of discussions about the place of technological change in modern society and the implicit assumption among many people that there is some inexorable power vested in science that obligates societies to adapt to its discoveries. The CRG board believes this view to be patently false. Rather, it is the fundamental right and obligation of members of a democratic society to decide collectively whether a new technology is consistent with their needs and values. Technology is not autonomous, but it may end up being accepted by default if society hears only the voices of its false prophets.
In cases where applications of genetic technology have resulted in public opposition, the burden is too often placed on skeptics to demonstrate why certain uses should be restricted or prohibited. The reason is simple. As a society we have too easily fallen prey to the idea that there is an inalienable right for science and technology to move forward. Those who question that “right” face a high burden to prove probable risks or societal costs, weighed against the economic benefits of new technologies to investors or the general public.
But not all issues raised by discoveries in genetics can be resolved by weighing traditional costs and benefits. Some of the consequences of new genetic technologies are so significant in their social implications that they should be assessed in terms of whether they violate a basic right of individuals, minority communities, or global citizens to protect their heritage for generations to come.
The initial publication of the Genetic Bill of Rights in April 2000 included a preamble. Both the preamble and the ten principles making up the GBR are reproduced in the appendix of this volume. The original framers of the GBR understood that each principle required further analysis, justification, and interpretation. They also recognized that there would be differences in how people, even generally like-minded people, would approach the principles subsumed under the GBR.
For this volume, we invited the comments of a group consisting of CRG board members involved in the drafting of the Genetic Bill of Rights as well as others who have offered critical commentaries or participated as social activists on biotechnology issues. Their commentaries provide an historical and philosophical grounding for the GBR, but they also raise many questions.
Consider, for example, the right expressed in Article 3: “All people have a right to a food supply that has not been genetically engineered.” Does this imply that there should be no genetically modified (GM) foods? Or does it imply that there should be a choice enabling people to opt out of the global experiment on the genetic modification of the food supply if they so choose?
What responsibilities are implied in the principle that all people have a right to protection from environmental toxicants that can harm their genes or those of their offspring? After all, ultraviolet radiation from the sun is mutagenic to human DNA. How can such a right distinguish between natural and produced mutagens? With whom does responsibility rest for protecting people against environmental mutagens? And should environmental mutagens have a preferred status relative to other environmental toxins that may harm somatic rather than germ cells (eggs, sperm, or their precursors) or that damage cells and organs without disturbing the individual’s genetic make-up?
The tenth article, “All people have the right to have been conceived, gestated and born without genetic manipulation,” presents its own special problems of interpretation. First, this is framed as a right to be protected against something, as opposed to a right available to someone, as in the right to take a certain action or engage in certain behavior, or hold certain beliefs. This type of “right” is not without precedent. Under the Occupational Safety and Health Act (OSHA), workers have the right to safe working conditions. Thus, they have the right to be protected from occupational harm. A regulatory body, the Occupational Safety and Health Administration, is supposed to protect that right for workers.
Second, how can a person have a right to be protected from something that happened to them before they became a person? This raises the question of whether “rights” have a retroactive function that reaches back prior to personhood. Are there such things as fetal rights? Can fetal protections be interpreted retrospectively once the fetus becomes a person?
While the GBR is framed in terms of the rights of persons, the first article suggests that people provide stewardship for all biological species on the planet. Implicitly, the interests of all species are found in the protection of biodiversity, although the concept of rights in the GBR is afforded solely to persons.
Civil society needs powerful tools to respond to the political and economic interests driving the genetics revolution. The Genetic Bill of Rights recognizes a fundamental inadequacy in current mainstream utilitarian, incremental, and ad hoc approaches to protecting human rights and the environment against these formidable forces. The choices raised by genomic medicine, the transformation of our fields and farmland, and the private appropriation of our biological heritage call instead for a broad, robust decision-making framework that puts our fundamental rights and values first. Because the questions we are presented with are complex, and the prospects and perils uncertain, such a framework will undoubtedly mean both measured acceptance of some new technologies and their products, as well as outright rejection of others. In each case, however, the public deserves to know to what extent the choices our governments make in biotechnology are consistent with our fundamental liberties and the core values of our local and global communities.
