Genetic Information Ethics Statement
Use of Genetic Information and Technology
As Christian physicians and dentists we affirm:
- All human beings have been individually created through the providential interest and design of Almighty God. Being created in the image of God, every human being has infinite worth, regardless of genotype or phenotype.
- The diversity of individuals is part of the wonder and strength of God's sovereign design.
- Each human life is a composite of genetic, environmental, social, volitional and spiritual factors.
- God has endowed humans with minds capable of exploring but only partially understanding the magnificence and intricacies of His Creation. Human knowledge and wisdom are limited and may be used for evil or good.
- God has mandated good stewardship of Creation, both of ourselves and the surrounding world.
Therefore, we believe:
- The presence of a disability, either inherited or acquired, does not detract from a person's intrinsic worth.
- The scientific exploration of life, including its genetic foundation, is proper and consistent with God's mandate and humanity's created nature, but must be conducted within biblical constraints.
- Genetic information may be of legitimate value in guiding the care of patients.
- Because a minor is unable to give informed consent, for genetic testing of a minor to be performed, it should benefit him during the period of time prior to majority. Therefore, pre-symptomatic testing of a minor should not be performed for disorders that will not either affect his health until after majority or result in therapeutic intervention before majority.
- An individual's genetic information should be kept strictly confidential.
- Somatic cell manipulation to replace absent or defective genes is consistent with the goals of medicine, and may be good stewardship of knowledge. Such manipulation should be performed only after extensive study demonstrates the specificity, benefits and risks of these interventions, or as part of an approved clinical trial.
- Germ cell manipulation as a technology carries with it a much higher risk of harm and abuse than somatic cell manipulation, in that it affects future generations. But, we do not believe it is appropriate to preclude categorically the potential use of this technology. It may become possible to correct safely and specifically some severe deficiencies (e.g. hemophilia) for multiple generations, and we do not wish to condemn such a beneficial use of technology.
- The search for and use of genetic information to justify destroying an existing life, born or unborn.
- The use of genetic information for discriminatory purposes including infringement upon the right to procreate.
- The use of genetic manipulation to augment human attributes.
- The use of a patient's genetic information for societal benefit if such use harms or could potentially harm that individual.
- The reductionist belief that humans are simply the product of their genetic destiny.
As more knowledge becomes available, we need to seek humbly and prayerfully God's wisdom and guidance in the use of genetic information and technology.
Approved by the 1996 House of Delegates with a vote of 78 in favor and 2 opposed.
The science of genetics began in 1866 when Johann Gregor Mendel first described the mathematical probability of transmission of some characteristics. Genetics continued to be primarily a descriptive statistical endeavor until 1953 when Franklin and Wilkins demonstrated the crystallographic structure of DNA and Watson and Crick described the double-helix configuration of that awesome molecule. The field of genetics has mushroomed since then.
The more recent ability to diagnosis prenatally structural and genetic anomalies by ultrasound and amniocentesis, and the scientific beginnings of genetic manipulation, have opened a wide spectrum of moral as well as professional questions and problems. Identification and description of the entire human genome will soon be complete, and proposals for the use of this information raise unparalleled ethical questions. Questions of genetic ethics will doubtless be the most pressing questions in medical ethics in the 21st century.
There has been great impetus to identify diseases which have genetic causation or predisposition, and even more recently, encouraging scientific strides to correct some of these identified "defects".
The professional community of clinical geneticists and genetic counselors has long taken pride in their morally neutral stance; they only give the facts and the patient or family is expected to apply their own moral values in making difficult decisions about reproduction and/or the continuation of pregnancy. The primary focus of ethical discussions about genetic issues in the secular community is the individual's right to self-determination. And the predominant societal bias is that we should strive to have "perfect babies".
Much of the public debate in the 1960's and 70's about abortion focused on the issue of the fetus with genetic anomalies. Even though most abortions are done for other reasons, these arguments about preventing the birth of abnormal babies were persuasive to many. Much of the professional and public community has since been polarized into those who support a woman's right to choose an abortion and those who defend the right of the unborn to be protected.
Christians also support scientific progress to improve the lot of humankind. However, Christians who seriously look to God and to scripture for guidance in making decisions believe that other principles may be of equal or even greater importance than self-determination.
Christians have a different world-view than most who discuss issues of genetic ethics from a secular perspective. That world view is centered on a sovereign God, rather than on the autonomous individual. The primary Christian contribution to this discussion is the concept that each individual is a unique creation of God, and each is made in His image (Genesis 1:26). Since we exist in a fallen world, however, we are not perfect either physically or spiritually. Still, the Almighty God is the Creator of all, even those who humankind deems significantly abnormal (Exodus 4:11).
At the same time, God has given us free will to make decisions, even those decisions which He might not desire (Matthew 7:13-14). We are stewards of our bodies and lives and are responsible for how we use these remarkable gifts (I Corinthians 6:20).
God's sovereignty and our accountability put a significantly different spin on the ethical principles which govern decisions about the use of genetic information and technology. From this perspective, it is impossible to be morally neutral in clinical situations which involve decisions about whether to test for "imperfections" and then to guide decisions about whether to continue the pregnancy. Such decisions are clearly moral decisions. When giving counsel in these situations, it is very difficult, if not impossible, to merely present facts in a morally neutral fashion.
In 1996, a national conference of Christian scholars was held in Deerfield, IL to discuss issues of genetic ethics from a clearly Christian perspective. That conference was jointly sponsored by The Center for Bioethics and Human Dignity, the Christian Medical and Dental Society, the Christian Nurses Fellowship, and the Christian Legal Society. The proceedings of that conference are available in a book entitled Genetic Ethics: Do the Ends Justify the Genes? published in 1997 by Eerdmans (U.S.) and Paternoster (U.K.). Several of the accompanying resources are taken from this book.
Verhey A., Theology after Dolly. Christian Century 19 Mar, 1997: 285-6.
Near the beginning of bioethics, Noble laureate Joshua Lederberg wrote an article speculating on the prospects of cloning human beings to which Paul Ramsey wrote a reply. In this article, the author revisits Ramsey’s reply, examining such themes as utilitarianism and freedom. See also pages 286-88 of the same issue.
Orr RD. The temptation of human cloning. Today’s Christian Doctor 1997; XXVIII(3):4-7.
The arrival of Dolly, the first cloned sheep, elicited floods of praise, criticism, and doomsday predictions. The author discusses the secular arguments made for and against cloning and then in turn, examines the Biblical principles related to this issue. He concludes, “Cloning goes against God’s design for humans. We should not base our opposition to human cloning on hyped-up fears gleaned from science fiction…let us reason together, let us pray, let us search the Scriptures for guidance, and let us rely on the Holy Spirit to give us guidance and clarity on this issue.”
Childress JF, Wolf SM, Campbell CS, Callahan D, Parens E, . Cloning human beings: Responding to the National Bioethics Advisory Commission’s report.” Hastings Center Report 1997;27(5):6-22.
Following the birth of Dolly, President Clinton asked the newly formed National Bioethics Advisory Commission (NBAC) to study the ethical and legal issues surrounding cloning. This collection of essays includes a summary of the NBAC report and pieces by several prominent authors responding to the report.
Kodish E, Wiesner GL, Mehlman M, Murray T. Genetic testing for cancer risk: How to reconcile the conflicts. JAMA 1998;279(3):179-81.
“Genetic testing for cancer susceptibility is moving from the research laboratory to the clinical domain and may become a useful tool for public health. However, clinicians and patients must balance potential gains in cancer prevention and control with the risks of testing and screening. Recent policy directives, which conflict with one another, reflect the promise and the peril of this cancer genetics technology. In this article, using breast cancer predisposition testing as an example, we describe 3 such statements from organizations selected because they represent researches, oncologists, and consumers. Because practicing clinicians will encounter patients who request testing, we conclude with suggestions to help clinicians understand these conflicting positions and respond to patients.”
Kassirer JP. Rosenthal NA. Should human cloning research be off limits? New England Journal of Medicine 1998;338(13):905-6.
In the wake of Dolly, Richard Seed proclaimed his willingness to clone a human for a fee. The fear that followed his announcement generated bills in Congress to halt all cloning experiments using human cells. In this article, the authors oppose these bills based on the possible therapeutic applications and our limited knowledge of cloning. However, recognizing that regulation is needed, they use as an example recombinant DNA technology, which when introduced was not legislated, but self-regulated by strict guidelines. The authors conclude, “At one extreme, cloning of human cells conjures up images of wasted embryos and deformed babies, of infinite life, master races, and duplicates of famous scientists, athletes, and the rich. At the other extreme, cloning is touted in grandiose fashion as a technology with boundless implications for the treatment of infertility and disease. The truth probably lies somewhere in between. The difficult ethical judgments about how to apply this new technology can be made only with full knowledge of the scientific facts.”
Cohen JR. In God’s garden: Creation and cloning in Jewish thought. Hastings Center Report 1999;29(4):7-12.
The author shares a different point of view on cloning based on another look at the Creation story. Traditionally, Creation is viewed as having been completed by God and any human attempt to circumvent this perfect design would be a transgression. However, a contrasting interpretation can be used - that of creation not having been completed, but being only a part of the transformative process, of which we have the opportunity or even responsibility to finish. The author then discusses the various arguments against cloning and concludes, “In time, we may well see a world in which many people will be cloned or genetically engineered, while others will be created through traditional means. Perhaps both will be pleasing in God’s eyes.”
Harris CE. Perfecting mankind: Eugenics, disease and the Human Genome Project.” Today’s Christian Doctor 1999;XXX(3):12-5.
Although some hail the almost finished Human Genome Project as a major breakthrough in medical technology and knowledge, the author looks back in history and cautions that the availability of such information may bring more opportunity for abuse. He raises the issues of perfecting our children’s genes at will, social eugenics, and the use of genetics as an excuse for behavior. He concludes by outlining possible risks to Christians. “Unless Christian physicians vigorously maintain their role as the patient’s advocate, resisting medical decisions based on social necessity or perceived human worth, we will be brushed aside or buried in a world dedicated to genetic engineering for social benefit.
Hook CC. Genetic testing and confidentiality. Chapter 10 in Genetic Ethics. Paternoster Press, Grand Rapids MI. 1997
The author first discusses genetic testing in general, emphasizing the importance of specificity and sensitivity in order for these tests to be used as population screening tools. He then discusses the risks of discrimination based upon genetic information, providing published examples. He goes on to discuss different theories and approaches for protecting patients' genetic information, including the erroneous approach of using "shadow files", and the "no exception rule" to disclosure advocated by many scholars. He challenges the latter approach using the physician's obligation of protecting individuals from known harm and he develops the thesis that the duty to protect may legitimately override strict confidentiality in some circumstances. To support this contention he cites the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research and the Institute of Medicine's conclusions supporting breach of confidentiality in regard to genetic information in certain circumstances. The author states that the only solution to the protection of patients from insurance and employment discrimination is the passage of national legislation prohibiting such discrimination. He concludes by emphasizing that solutions to these weighty issues should be decided with much thought and by seeking God's wisdom and guidance.
Rothenberg K, Fuller B, Rothstein M, Duster M, Kahn MJE, Cunninghan R, Fine B, Hudosn K, King M, Murphy P, Swergold G, Collins F. Genetic information and the workplace: Legislative approaches and policy challenges. Science. March 21, 1997;275:1755-7
The authors argue that the unique relationship between employee, employer and health insurance carrier requires protection of the employee's genetic information from the employer. Recognizing the need to protect an employee with a positive predictive test for disease as defined by the Americans with Disabilities Act, the authors argue for protection of genetic information from employers.
Hudson K, Rothenberg KH, Andrews LB, Kahn, MJE, Collins FS. Genetic discrimination and health insurance: An urgent need for reform. Science. October 20, 1995;270:391-3
The authors describe in detail both general and specific cases of genetic discrimination, and outline various state-level laws designed to protect individuals against genetic discrimination. They then argue for a federal law based on limitations of state-level laws, including federally mandated exemption of self-funded health insurance, and protection of genetic tests, versus the broader genetic information generated from family history, physical examination, etc.
Andrews LB. Legal aspects of genetic information. Yale Journal of Biology and Medicine. 1991;64:29-40
The author discusses the legal implications of confidentiality of genetic information to relatives and law enforcement officials. She argues for the use of restraint and good judgment in release of information to relatives, stating that contacting scattered relatives could become a potentially error-prone burden. In the case of law enforcement, she believes that disclosure may dissuade those in need from seeking medical attention in order to ensure privacy.
Kenen RH, Schmidt RM. Stigmatization of carrier status: Social implications of heterozygote genetic screening programs. American Journal of Public Health. 1978;68(11):1116-20
The authors argue for investigation of possible latent psychological and social consequences of a genetic screening program before the inception of a national program. They find relatively few studies available that explore these consequences. The implications of stigmatization of carrier status in a heterozygote are discussed, with much thought given to the lesser value placed on handicapped individuals by secular society. They believe that society should carefully consider the effects of genetic screening through scholarly discussion, and a reexamination of the status of disable persons.
Peters T. Should we patent God’s creation? Dialog: A Journal of Theology Spring, 1996;35(2):117-32.
Sproul RC. Playing God: Dissecting Biomedical Ethics and Manipulating the Body. Grand Rapids, MI: Baker Books; 1997.
SDA statement and commentary by Walters JW, De Leon M. Christianity and human cloning: A Seventh-Day Adventist declaration of ethical principles Loma Linda University Update 1998;14(2):1-7.
Palca J. Keeping genetic information under wraps. Hastings Center Report. 1997; 27(2):6 - The author discusses current congressional action on legislation to protect genetic information.
Peters T. In search of the perfect child: Genetic testing and selective abortion. Christian Century. October 30, 1996:1034-6 - The author draws a distinct line between genetic interventions to cure a disease, and interventions to improve athletics, academics and aesthetics. We are implored by the author to remember that "God loves people regardless of their genetic makeup, and we should do likewise."
Weir RF, Horton JR. DNA banking and informed consent - Part 2. IRB. 1995; 17(5,6):1-8 - The authors examine informed consent forms for human subject research, judging them, and discussing prudent disclosures for sharing genetic information in the future.
Botkin JR. Fetal privacy and confidentiality. Hastings Center Report. 1995; 25(5):32-39 - The article discusses the limits of fetal genetic information that should be made available to parents and the health care system.
Annas GJ, et al. Drafting the Genetic Privacy Act: Science, policy, and practical considerations. Journal of Law, Medicine, & Ethics. 1995;23:360-6 - The authors discuss the drafting of the proposed Genetic Privacy Act, and the ethical principles used to guide the authors.