The Ethics for a Geneticist of the Genetic Engineering of Humans
The vast developments in the genetic engineering of humans present opportunities and ethical challenges (Sandel 5). There are opportunities of preventing numerous incapacitating diseases through genetic screening and stem cell therapy, but there are also ethical challenges that implicate “disquieting” notions of fallible human beings playing God and risks of violating the rights of children to autonomy (McLean 723; Sandel 8; Talbot 40). Geneticists are particularly burdened to consider ethical issues and their implications, because they are the “designers” of this new science (Mao 690). On the other hand, there is scant literature on the code of ethics of geneticists, who work in the human engineering sector. This is most likely because of the view among scholars and geneticists that there are benefits and drawbacks of forming a standard code of ethics (Grey 55; Kettner 152; Wertz and Fletcher 277). There is currently no universal code of ethics for geneticists, although international agencies provided a number of codes of ethics that aim to guide geneticists in their line of human genetic engineering work. This paper explores these codes of ethics and particularly, it discusses: 1) their advantages and disadvantages, and 2) examples of codes of ethics. It argues that there is a need for a universal code of ethics for geneticists that will serve advantages for society and science.
A code of ethics is already a given for numerous professions, such as physicians, nurses, psychologists, and others, but geneticists have not yet embraced any universal code of ethics for human genetic engineering (Grey 55; Kettner 152; Wertz and Fletcher 277). There are apprehensions that a code of ethics would not be realistic, because of evolving advances in science and changes in human beliefs and attitudes about human genetic engineering, as well as legislative changes (Kettner 152; Wertz and Fletcher 277). The following arguments are against forming a code of ethics for geneticists: 1) Codes are rarely used, so they would not be meaningful to genetic practice. 2) Existing international codes on human life and rights are already enough to guide geneticists. Universal treaties in human rights provide ample guidelines for preserving human dignity and freedoms. 3) A code would risk excluding the views of the minority. 4) Ethics is too subjective to be “codified.” Ethics is affected by moral relativity. 5) Reproduction decisions are issues of autonomy. Parents have the right to choose their own babies. 6) Technology advances happen too quickly and codes might not reflect the latest technological trends. What may be banned by a code of ethics now may be acceptable in the future, because of technological advancements. 7) Codes cannot capture changes in human values, attitudes, practices, and beliefs. Some people and organizations might be more supportive of stem cell therapy in the future, for instance, if embryonic cells would no longer be used because of new technologies. 8) Codes would lead to restrictive laws and research. 9) Codes could only lead to lawsuits (Kettner 152; Thurmon, 292; Wertz and Fletcher 277).
On the other hand, some scholars and geneticists also assert the importance of a code of ethics for geneticists of human genetic engineering, especially because of the slippery slope they often struggle with (Kettner 152; “The Declaration of Inuyama;” Wertz and Fletcher 277). In an interview with Dr. Craig Venter of the J. Craig Venter Institute (JCVI), Venter expresses his concerns for ethical reviews for his genetic work. This interview shows the legitimate need for a code of ethics that can guide the research and practice of geneticists in human engineering projects. The following are the advantages of having a code of ethics: 1) A code would reduce the fears of the public about eugenics, genetic manipulation, using genetics in wars, and changing fundamental aspects of human nature (i.e. making animals human-like). 2) A code would make geneticists accountable for the ethical implications of their work on diverse stakeholders. People cannot assume that geneticists are always acting ethically, but a code of ethics can help geneticists check the ethical implications of their actions. 3) A code would protect patients from harm and being used for self-interests of geneticists. 4) A code can prevent the development of restrictive laws, because it will provide flexibility in genetics practice and research. 5) A code would prevent onerous lawsuits, because it will set standards that will no longer be done by the courts. 6) A code can transmit the moral values and concerns of geneticists to the next generations. 7) A code will enhance the public image of geneticists of human genetic engineering. 8) A code will enhance the “moral climate” of the profession. 9) A code can positively affect public policy. 10) A code can expand opportunities for international cooperation (Kettner 152; Lisker 609; Thurmon, 292; Wertz and Fletcher 277).
There are two international codes of ethics that can be used by geneticists involved in human genetic engineering. The first is the “International Declaration on Human Genetic Data” from the United Nations Educational, Scientific, and Cultural Organization (UNESCO). The main framework of this document is based on human rights. It states the ethical issues that geneticists should remember, as they pursue their line of duty. In particular, geneticists are called to use existing international and regional instruments, national laws, regulations and ethical texts that will ensure the protection of human rights and fundamental freedoms (UNESCO 718). Geneticists must also respect human dignity, as they conduct the “collection, processing, use and storage of scientific data, as well as of medical data and personal data” (UNESCO 718). Geneticists must understand the contextual position of the information they are collecting and analyzing (UNESCO 718). Geneticists must look after the confidentiality of human genetic data and privacy at all times (UNESCO 719). Geneticists also have the responsibility of fostering international cooperation, especially in relation to developing countries (UNESCO 719). They must help developing countries obtain access to genetic research and methods. Geneticists must respect the rights and welfare of the individual over public welfare (UNESCO 719). For instance, they cannot force people to be part of their genetic tests or screening, even if they argue that it will benefit the public.
Geneticists must affirm the principles provided by the “Universal Declaration on the Human Genome and Human Rights” and these are the:
principles of equality, justice, solidarity and responsibility as well as respect for human dignity, human rights and fundamental freedoms, particularly freedom of thought and expression, including freedom of research, and privacy and security of the person, which must underlie the collection, processing, use and storage of human genetic data. (UNESCO 719)
Geneticists must ensure that genetic data is not used for discrimination purposes (UNESCO 738). All efforts must be made to prevent the use of genetic data that will lead to the “stigmatization of an individual, a family, a group or communities” (UNESCO 738).
Geneticists must also provide genetic counseling about the effects of genetic procedures on patients: “Genetic counseling should be non-directive, culturally adapted and consistent with the best interest of the person concerned” (UNESCO 738). UNESCO also asks for the active participation of the International Bioethics Committee (IBC) and the Intergovernmental Bioethics Committee (IGBC) (728). These committees shall play a large role in the execution of this Declaration and the protection of human rights principles (728).
Another important document that provides a code of ethics for geneticists is the “The Declaration of Inuyama.” This Declaration urges geneticists to be open in discussing the nature and development of human genetic engineering, so that the fears of the public for the unknown can be allayed (322). Like the “International Declaration on Human Genetic Data,” “The Declaration of Inuyama” calls for geneticists to value individual autonomy versus public interest (322). “The Declaration of Inuyama” also stresses the importance of confidentiality and privacy of genetic data and results of studies (322). Geneticists must also provide genetic counseling, so that concerned individuals will know the risks involved in genetic studies (322). There should also be independent ethical review committees that analyze ethical implications of geneticists’ work, especially when children subjects are employed (323). Geneticists must also guarantee that they are developing ethical procedures (323). This can be attained by using fully-volunteer-based projects, so that eugenics and other types of abuses and misuses can be avoided (323). Geneticists must also aspire for multidisciplinary and multicultural dialogue on ethical issues and concerns to improve the establishment and monitoring of ethical standards (323). “The Declaration of Inuyama” also emphasizes the needs of developing countries. The document asserts that developing countries should also benefit from the progress of human genetic engineering (323). Geneticists should help ensure that methods and techniques of therapy and research are affordable and accessible for these countries, and easily disseminated, if possible (323).
Despite the wide considerations provided by these international codes of conduct, it has been criticized for lack of flexibility to changing technologies and laws (Kettner 152; Thurmon, 292; Wertz and Fletcher 277). Wertz and Fletcher (277) assert that current international standards tend to be static; although some can stand the test of time. Kettner (152) argues for a more integrated approach in devising a code of ethics for geneticists. He recommends the combination of grand moral theories, parochial values, and global morally normative values. He posits his views from an applied ethics perspective, wherein geneticists consider ethics from a pragmatic viewpoint.
Geneticists should congregate and form a universal code of ethics that integrates grand moral theories, parochial values, and global morally normative values. They should create this code because it will guide their ethical reasoning. A code of ethics will also improve the acceptance of their work, because it shows sensitivity to diverse cultural, social, economic, and political dimensions of human genetic engineering. A code of ethics will not restrict their work, but it will prevent them from conducting unethical and self-serving studies.
A code of ethics is not seen as the one great solution to the slippery slope that geneticists grapple with. However, it presents a moral backbone for scientific endeavors. It affirms a dedication to essential human rights and civil freedoms. Finally, a code of ethics supports the fundamental notion that science is not morally neutral, and that it should also aspire for high levels of ethical values in evaluating its processes, decisions, and consequences.
Works cited
Grey, William. “The Ethics of Human Genetic Engineering.” Australian Biologist 9.1 (March 1996): 50-56.
Kettner, M. “New Genetics, New Ethics?” The New Genetics: From Research into Health Care: Social and Ethical Implications for Users and Providers. Eds. Irmgard Nippert, Heidemarie Neitzel, and Gerhard Wolff. Germany: Springer, 1999.
Lisker, Rubén. “Ethical and Legal Issues in Therapeutic Cloning and the Study of Stem Cells.” Archives of Medical Research 34.6 (2003): 607-611.
Mao, Xin. “Chinese Geneticists’ Views of Ethical Issues in Genetic Testing and Screening: Evidence for Eugenics in China.” The American Journal of Human Genetics 63.3 (1998): 688-695.
McLean, Sheila A. M. “The Gene Genie: Good Fairy or Wicked Witch?” Studies in History and Philosophy of Science Part C: Studies in History and Philosophy of Biological and Biomedical Sciences 32.4 (2001): 723-739.
Sandel, Michael J. The Case against Perfection: Ethics in the Age of Genetic Engineering. Cambridge, MA: Belknap Press of Harvard University Press, 2007.
“The Declaration of Inuyama.” Sourcebook in Bioethics. Eds. Albert R. Jonsen, Robert M. Veatch, and LeRoy Walters. Washington, DC: Georgetown University Press, 1998.
Thurmon, Theodore F. A Comprehensive Primer on Medical Genetics. Pearl River, NY: Parthenon Publishing Group, 1999.
United Nations Educational, Scientific, and Cultural Organization (UNESCO). “International Declaration on Human Genetic Data.” Standard-setting in UNESCO: Conventions, Recommendations, Declarations, and Charters Adopted by UNESCO (1948-2006). Paris: UNESCO, 2007.
Talbot, Margaret. “A Desire to Duplicate.” New York Times Magazine 4 Feb. 2001. 40-48. Print.
Venter, Craig. Interview by Susan Watts. Newsnight. 20 May 2010.
Wertz, Dorothy C. and John C. Fletcher. Genetics and Ethics in Global Perspective. Norwell, MA: Kluwer Academic Publishers, 2004.