Ethical Concerns

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Ethical issues pervade any public health strategy involving genetic tests or screening. This section examines some of the key ethical issues concerning individual informed consent, the design and application of genetic screening and testing, and privacy and discrimination. These and other issues are explored in the context of the sometimes divergent views of public health and individual ethical theories discussed below.

BIOETHICS AND PUBLIC HEALTH ETHICS. Ethical questions arising from genetic testing and screening in the context of public health require an understanding of the differing perspectives of individual and public health ethics. Principles of bioethics largely have an individualistic focus. Persons as individuals are entitled to autonomy, are owed fair and equitable treatment, and must not be harmed intentionally. These rights inhere in each person and, consequently, are owed to each person. Principles of public health ethics do not abandon this individualistic approach. Protection of individual rights is critical in public health practice that increasingly stresses an ethic of voluntarism.

In contrast, public health is focused on the health of communities. Protecting the health of communities sometimes may require individuals to act or contribute to the larger community goals. For example, screening infants for genetic diseases requires parents to allow their children's blood to be tested. The resulting infringement on individual autonomy and decision making under this scenario may be minimal, but the impact on public health can be extraordinary. Public health authorities suggest that this infringement is completely justifiable under a public health ethical framework that envisions individuals as members of society with certain communal goals.

Many bioethicists often perceive a conflict between individual ethical rights and duties and public health ethics. Public health programs and efforts seemingly interfere with individual decision making, bodily integrity, and other protected interests. Ideally, public health programs incorporate the ethical rights of individuals to promote individual participation, which is essential to accomplishing many communal health goals. Sometimes it is not possible to respect the ethical interests of individuals and accomplish legitimate public health goals. For example, it is problematic to allow persons to deny public health authorities access to their diagnoses of genetic disease, which the authorities need to conduct effective surveillance. The individual's claim of a breach of privacy rights under principles of autonomy could trump the community's goal of monitoring disease among the population. Public health ethics suggests that persons participate in public health measures even when some infringement of their individual rights may follow. This analysis provides an appropriate framework for considering the ethical issues discussed below.

INDIVIDUAL INFORMED CONSENT. Principles of autonomy strongly support the individual's right to informed consent before genetic testing or screening. Many law and policy makers, particularly at the state level, have passed legislation or created administrative regulations in the last decade that require specific, written informed consent (sometimes including genetic counseling). Before the administration of a test patients are entitled to explanations of the nature and scope of the information to be gathered, the meaning of positive test results, the underlying disease or condition, and any risks involved in the testing or activities that follow a positive result. Through advance informed consent it is hoped that patients can weigh the benefits of genetic testing against the risks. However, problems in understanding the complexities of genetic science and uncertainties in the meaning of positive test results can limit the value of informed consent (Press and Clayton).

Should genetic tests ever be allowed without informed consent? Public health officials may justify mandatory newborn screening programs without parental consent by reference to utilitarianism and corresponding legal principles that authorize the state to protect children. However, at least in regard to autonomous individuals, there is little justification to mandate genetic testing or screening without informed consent.


Although genetic screening may be enhanced through the use of accurate tests, there are other key considerations, including determining (1) the at-risk population to be targeted for screening, (2) the method or methods of screening, whether mandatory (required) or voluntary (optional), (3) the persons who have access to the screening program (Lin-Fu and Lloyd-Puryear), (4) whether there is an effective and affordable treatment for the condition being screened, (5) the corresponding benefits to individuals of screening in cases in which treatment is lacking, and (6) whether the screening program is well tailored to accomplish the underlying public health goals.

Each of these criteria underlying the implementation of a genetic screening program is critical. If the screening program targets too large a group and is thus over-inclusive, persons may unjustifiably be asked or required to participate without any individual or public health benefit. If the screening is mandatory, individual autonomy can be breached unfairly. In cases in which persons lack access to testing services, they are unfairly left out of a public health program designed to improve communal health. If there is no effective treatment for a genetic condition, is there a valid reason to screen anyone for it? Many public health officials would suggest that there is not.

PRIVACY AND DISCRIMINATION. Many persons view their genetic information as highly sensitive and take affirmative measures to protect the privacy of that information. According to Georgetown University's Health Privacy Project (2001), over 15 percent of people engage in privacy-protective behaviors (e.g., withholding information, providing inaccurate information, doctor hopping, or avoiding care) to shield themselves from misuse of their health information. Individuals are concerned about the privacy of their genetic data because breaches can lead to invidious discrimination against an individual or group (Hodge and Harris) by insurers, employers, government agencies, and other societal members. Health, life, and disability insurers may attempt to use genetic test results to limit or deny coverage. Employers may reject applicants for positions or advancement on the basis of their genetic flaws (Gostin, Hodge, and Calvo).

Complicating the privacy claims of individuals, however, are the legitimate claims of others who have a right to know about another person's genetic profile. Spouses, offspring, and close family members may claim a right to obtain knowledge of an individual's genetic test results. State courts in Florida and New Jersey have suggested that healthcare workers may be obligated to share the results of genetic tests with blood relatives of their patients in certain circumstances. Right-to-know claims may further principles of beneficence but can impinge on the privacy rights of individuals participating in public health genetic screening programs.

GENETIC EXCEPTIONALISM. Individual privacy and antidiscrimination concerns relating to genetic testing have led many states to adopt genetic-specific privacy and antidiscrimination laws that are intended to protect persons from wrongful acquisition, use, or disclosure of individually identifiable genetic data. These laws treat genetic information differently from other medical or personally identifiable information and typically establish heightened protections (Gostin and Hodge). Within the context of public health uses of genetic testing or screening programs the trend toward genetic exceptionalism presents its own ethical and practical concerns.

Genetic exceptionalism suggests that genetic information is unique. Many people believe that genetic information is different from other health data for several reasons. Foremost among those reasons is its predictive nature. Unlike most other medical records, which describe an individual's past or current health condition, genetic tests can identify (with varying degrees of confidence) the increased risk of future disease in otherwise healthy individuals. Other qualities add to the perception that genetic information is different. It remains largely stable throughout life. Genetic footprints are remarkably identifiable. Genetic conditions are inherited, and this means that genetic information necessarily reveals information about an individual's current family members and future offspring. Finally, although genetic tests are limited in their capabilities, genetic information can transcend health status to reveal predispositions and personal characteristics (Gostin, Hodge, and Calvo).

There are drawbacks to treating genetic information differently. Strict protection of autonomy, privacy, and equal treatment of people with genetic conditions may threaten the accomplishment of communal goods, including public health surveillance. As scientists discover more medical conditions that are gene-based, it will become increasingly difficult to distinguish genetic data from other medical data. Genetic information is part of the continuum of an individual's medical record and cannot be separated from those data easily. Some privacy advocates argue that genetic information is more sensitive than other health information because it can provide significantly more personal information about an individual's existing and future medical conditions. However, nongenetic electronic health records also may provide many personal details. Electronic health records include private demographic, financial, and family history information as well as a patient's social, behavioral, and environmental factors (Gostin and Hodge).

Genetic-specific statutes may be considered unfair because they treat people who are facing the same social risks differently on the basis of the biological cause of their otherwise identical health conditions. Why, for example, should medical information about a woman who has developed breast cancer of genetic origin (e.g., BRACA 1 or 2) be given greater protection than information about a woman who has developed breast cancer because of environmental or behavioral factors such as smoking (Rothstein)?

On a practical level, treating genetic diseases as distinct from other medical diseases or conditions may enhance the stigma of genetic testing and screening programs even as lawmakers attempt to remove their stigmatizing effects. This can create public fears and misapprehension about genetics that may discourage individuals from seeking testing or participating in screening programs and may thwart future scientific progress.

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