What are bioethics in genetics?
As early as the mid-1960s, advances in genetics and reproduction, life support, and transplantation technologies spurred an increased focus on ethical issues in medicine and scientific research. From the late 1960s through the mid-1970s, bioethicists were preoccupied with the moral difficulties of obtaining voluntary, informed consent from human subjects in scientific research. They concentrated on the development of ethical guidelines in research that would ensure the protection of individuals vulnerable to exploitation, including mentally or physically handicapped individuals, prisoners, and children. Beginning in the mid-1970s and continuing through the mid-1980s, bioethicists became increasingly involved in discussions of the definitions of life, death, and what it means to be human. In the mid-1980s, practitioners began to focus on cost containment in health care and the allocation of scarce medical resources.
Beginning in 1992, the Joint Commission on Accreditation of Health Care Organizations, the US agency that accredits hospitals and health care institutions, required these organizations to establish committees to formulate ethics policies and address ethical issues. Ethics teams within hospitals and professional organizations exist to provide consultation regarding ethical dilemmas in clinical practice and research. Such resources are critical as technological advances, particularly related to genetics and genomics, proceed more rapidly than policy. Centers for the study of biomedical ethics such as the American Society for Bioethics and Humanities are important forums for public debate and research. Since completion of the Human Genome Project, an increasing number of organizations are committed to ethical research and policy making related to the use of genomic information.
The overriding principle of bioethics and US law is to respect each person’s right to make decisions, free of coercion, about treatments or procedures he or she will undergo. This principle is complicated when the person making the decision is considered incompetent because of youth, intellectual disability, or medical deterioration. Other important principles include a patient’s right to know that medical practitioners are telling the truth, the right to know the risks and benefits of proposed medical treatment, and the right to privacy of health information.
Advances in genomics and genetic testing have presented numerous dilemmas for bioethicists, patients, and health care providers. For example, as the ability to forecast and understand the genetic code progresses, people will have to decide whether knowing the future, even if it cannot be altered or changed, is beneficial to them or their children. Knowledge of the genomic basis of common diseases has lead to the birth of direct-to-consumer marketing of testing that provides individuals with often complicated risk profiles for conditions such as diabetes and heart disease. Bioethicists are critical players in policy-making regarding this new form of personalized medicine.
Bioethicists help people determine the value of genetic testing, including the risks and benefits of genetic testing in particular situations. Factors typically considered before a person undergoes genetic testing include the nature of the test, the timing of the test, and the impact that the results will have on health and medical management. Testing can be done prenatally to detect disorders in fetuses; it can also be done before conception to determine whether a prospective parent is a carrier for a particular disorder or disease that could be passed to a child. Technology even allows for testing of embryos created by in vitro fertilization, thereby preventing the transmission of a genetic condition by transferring only unaffected embryos to the mother’s womb. Predictive and presymptomatic genetic tests can provide information about whether an adult has an increased susceptibility to, or will ultimately manifest symptoms of, a genetic disorder. Information gained from genetic testing could help predict the nature and severity of a particular disorder as well as potential options for screening or intervention. Knowing one’s genetic fate may be more of a burden than a person wants, however, particularly if nothing can be done to change or alter the risks that the person faces. Bioethicists act as guides through the complicated and often wrenching decision process.
Consumers of genetic testing must also decide whether the knowledge gained from the test is worth potential legal and social implications. In 2008, the Genetic Information Nondiscrimination Act (GINA) was signed into law. GINA provides protection against genetic discrimination in health insurance and employment, but it does not protect other insurance arenas, such as life insurance and disability insurance. Fear of discrimination may prevent some individuals from pursuing genetic testing that could provide beneficial guidance for preventive care. For example, a woman with a strong family history of breast cancer could have genetic testing to determine if she has inherited a hereditary cancer predisposition syndrome, which in turn would lead to increased vigilance with breast screening. Many women in this situation defer testing because of discrimination fears and risk detection of cancer at a much later stage, with potentially devastating consequences. Bioethicists can help guide policymakers in creating stricter protections against potential discrimination.
The Human Genome Project has provided researchers with a wealth of information, but this comes with a paucity of knowledge about the specific effects of the genetic sequence related to health and disease. Genome-wide association studies are ongoing to better understand the complicated nature of gene-gene and gene-environment interactions. In 2007, the first individual genome was sequenced, that of biologist Craig Venter, and the cost for individuals to sequence their own genomes has lowered consistently and significantly, from $2.7 billion in 2003 to around $1,000 in 2014. However, the challenge to bioethicists, researchers, and the general public is how to interpret the information in a meaningful way.
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