Social Work’s Role in Genetic Services

INTRODUCTION

For the past 30 years social workers have been providing genetics services and writing about the effect of genetic disorder diagnoses on families. In 1966, Sylvia Schild first began to define social workers’ role in genetics. Since then, social workers have contributed to the understanding and delivery of services to individuals and families affected by genetic conditions. Anticipating the current technological revolution, social work pioneers Schild and Black (1984) predicted that the most urgent task facing the profession would be preparing social workers for effective practice in genetics. Their call remains salient.

Traditionally, social work practice in genetics has been in the area of maternal and child health. Within two or three years the genetic information emerging from the Human Genome Project (HGP) will require practitioners in all settings to be prepared to work with clients on genetics issues. This clinical practice update (1) identifies the role of social workers in genetics in light of the revolutionary growth in the science and technology of genetics, and (2) illuminates the practice, policy, and ethical issues relevant to social work practice in genetics.

In 1990 the HGP was launched to identify all the genes on the human chromosome and their related diseases and traits. The promise of this research lay in the development of methods of prevention, treatment, and cure of genetic disorders. At present, however, the knowledge necessary to identify the genes that cause particular genetic disorders has substantially outpaced the knowledge necessary to prevent, treat, or cure them. Accordingly, genetic testing in most cases can only identify a person’s predisposition to a particular disease or trait for which there is yet no treatment or cure.

In addition to the current social work knowledge base, social workers need a basic understanding of genetic inheritance and a shift in the concept of person:environment.

Social workers in all settings must educate themselves about the process of genetic inheritance and understand the primary reasons that people seek genetic testing and counseling. Minimally, a social worker must understand the types of genetic conditions, including single gene disorders, chromosome anomalies, and multifactorial disorders, and the effect of harmful environmental toxins on development. Furthermore an understanding of the patterns of inheritance between generations (autosomal dominant, autosomal recessive, and X-linked recessive) is essential in working with families. (For further explanation of these terms, see Jackson, l996.)

Social workers are concerned primarily with multifactorial conditions, which are the most common yet most complex form of genetic inheritance. Multifactorial conditions are caused by an interaction of multiple genes and the environment. In some cases environment is thought to trigger genetic disorder. Conceptualizing "environment" as a trigger for genetic disease requires a shift in paradigm; that is, by controlling the environment one may be able to prevent disease. But the role of environment is not yet adequately understood, hence caution is required. People diagnosed with a predisposition for a condition—for example, mental illness—could be labeled, stigmatized by society, or discriminated against by employers and insurance companies. Some employers already are known to have tested employees for genetic conditions without their knowledge or permission and without informing them of positive results (Hawkins, 1997). Some examples of the risk associated with multifactorial disorder diagnoses are as follows:

• People with mental illness may be treated with medication only, rather than with medication plus psychoeducation and psychotherapy.
• People with genetic predisposition to mental illness may be discriminated against even though the disease is never manifest.
• People with a predisposition to addictive behavior may be incarcerated as a "societal precaution."
• Children may be labeled or mislabeled for learning and developmental disabilities, thereby providing a rationale for denying educational services. This risk is particularly high with minority populations.

Likewise, however, diagnosing a genetic predisposition could enable people at risk to seek appropriate help and care. Social workers must be steadfast in their role as advocates for the constructive application of these new diagnostic tools. Especially in the managed care environment, safeguards must be implemented to ensure that genetic information is used to the client’s full benefit.

Current social work training is applicable with some adjustment to all populations and settings in which social workers practice. It is important that professional social workers and social work students be educated about the specific application of skills to genetic cases. Social workers are already trained to view people from a biopsychosocial perspective and now must integrate that perspective with family systems theory, especially during assessment. In order to identify the patterns of disease in a family, the social worker may need to develop a three generation genogram as part of the assessment.

Because an individual’s genetic test in fact tests the whole family, the biology of a genetic condition must be thoroughly understood and explained to the client and his or her family to prepare them to make informed decisions about whether or not to be tested. Sensitivity to the principle of self-determination is essential in the process of informing clients and family members.

Professionals must take care to ensure that clients are fully informed about all aspects of genetic testing. Multidisciplinary teams should provide counseling before and after the decision to have a genetic test and after the test itself. Education includes medical and scientific information such as the intergenerational inheritance process, the risk and benefits of genetic testing to the individual and family, and the course of the disease or trait, as well as psychosocial counseling for coping and adaptation. It is important that all education be provided at a level that the client can understand and use. The highly technical nature of information about genetics, the historical treatment of ethnic and cultural minorities by Western medicine, and the potential for stigma and discrimination as a result of genetic testing also mandate that information be delivered in culturally specific ways.

At the micro level of practice, primary skills that define social work practice in genetics are:

• identifying clients with potential genetic disorders through case-finding and biopsychosocial assessment
• identifying and developing programs that provide assistance for persons with genetic conditions
• providing psychosocial counseling before testing to identify both risks and benefits of genetic testing for current and future generations
• providing psychosocial counseling after testing for purposes of restoring optimal psychosocial function following the diagnosis of a familial genetic disorder
• providing counseling particularly by social workers in maternal and child health settings during the family planning process
• providing counseling particularly by social workers in adoption-related settings regarding implications for the child of genetic information of the biological parents.

The profession’s position concerning counseling services emerging from the HGP is based on the principle of self-determination. Every individual should have access to professional pre- and posttest counseling if desired. The counseling must be nondirective and explore all of the client’s options. Some members of society may see genetics as an opportunity to rid society of less desirable traits that are not consistent with their values. Safeguards must ensure that society’s more vulnerable members are protected.

Social workers, unlike most other genetic providers, will have ongoing contact with clients. New genetic information may create disequilibrium, resulting in a crisis for an individual and his or her family. Social workers must use their clinical knowledge and skills to actively encourage the successful coping and adaptation of individuals and families by:

• encouraging clients to be active participants in their own case management
• working with clients and families to follow through on a plan of action and secure needed services
• developing a lifestyle modification plan, when indicated, to decrease the risk of a condition occurring. Behavioral risk reduction models hold promise for conditions where lifestyle modifications can alter the disease course.

Once established, the social worker–client relationship should be useful as the client adapts to the genetic condition over time. It is likely that additional education and supportive services will be beneficial at future key transition times.

Social workers traditionally have been responsible for the referral of clients for other available services. Genetic testing raises the question of what services are needed, what services are currently available, how they will be paid for, and how nondiscriminatory access can be assured.

Genetics poses new challenges for social workers regarding policy and advocacy. At a macro practice level, social workers’ role in genetics is defined by the following values:

• accessibility—voluntary and confidential genetic screening must be available to all people who desire it
• self-determination—the rights of people who are asked to participate in population screening (such as for cystic fibrosis, breast cancer, disabilities, and sexual orientation) must be protected
• autonomy—the clients’ right to choose to be tested or not must be preserved
• confidentiality—the right of an individual to "own" his or her genetic information must be preserved
• research—aggregate data are used for planning and developing service delivery.

The need for public policy to protect individuals from the misuse of genetic information cannot be overstated. Social workers’ involvement in the development of public policy will help ensure this protection. In addition to requiring that clients be apprised of the risks and benefits to genetic testing, public policy also must ensure individuals’ right to make family planning decisions without coercion from state or federal law, family members, professionals, employers, or insurance companies. Genetic testing should be done only with client consent.

Confidentiality regarding an individual’s genetic information must be protected by policy, but most states do not have safeguards at this time. The limits of confidentiality must be spelled out clearly to the client to ensure he or she makes a fully informed choice concerning testing.

Social workers also must advocate for insurance coverage of genetic counseling and testing. Without this coverage, access to testing will be limited to people of superior financial means, thus depriving poorer people from gaining valuable genetic information.

Some common ethical dilemmas or value conflicts raised by genetic testing are as follows:

• If someone knows that they have a high risk of getting a debilitating condition in the future, should he or she have to reveal their genetic test to an insurance company before he or she can buy a long-term disability or life insurance policy?
• Should an employer be allowed to require a genetic test during a preemployment physical examination as a condition of employment and for purposes of keeping down the company’s health insurance costs?
• Should states require an exchange of DNA tests between partners who apply for marriage licenses?
• Does confidentiality about the outcome of a genetic test extend to family members who also may be affected?

The NASW Code of Ethics (1996) provides guidance to social workers working in genetics. Social workers promote social justice and social change with and on behalf of clients. Social work interventions are guided by ethical standards, three of which are particularly relevant to genetics:

1. section 1.02 on self-determination

2. section 1.03 on informed consent

3. section 6.04 on social and political action.

Social workers have important and emerging roles to play in the clinical applications of the HGP. Currently technology is available that can identify a person’s predisposition to genetic conditions. Much less is known about prevention or cure. In the future, genetic tests will be used much as medical tests are used today, for diagnosis and treatment, prevention, or cure. During the current critical interim period, clients will benefit from a clear understanding of the limitations of our current knowledge of genetic disorders and treatment options.

Social workers are beginning to respond to the challenges of this interim period by striving to ensure the preservation of the rights of individuals receiving genetic counseling and the development of appropriate psychosocial and health care services and interventions. The social work emphasis on client self-determination, coupled with the use of supportive, solution-focused, nonjudgmental counseling techniques, prepares social work practitioners to assist individuals and their families to weigh the positive and potentially deleterious aspects of genetic testing and treatment options

For further information, contact:
Susan Taylor-Brown, PhD, MSW, MPH
at stbrown@mailbox.syr.edu or at
Syracuse University
School of Social Work
313 Sims Hall
Syracuse, NY 13244

Ann M. Johnson, PhD, MSW
Council on Social Work Education
Alexandria, VA

Note: This practice update was developed from an invitational social work genetics conference held at NASW, Washington, DC, May 13, 1994, sponsored by the Virginia Insley Fund, School of Social Work, Syracuse University, New York. The authors thank members of the task force who read and advised them on this document.

Hawkins, D. (1997, June 21). A bloody mess at one federal lab: Officials may have secretly checked staff for syphilis, pregnancy, and sickle cell. U.S. News & World Report, 26–27.

Jackson, J. (l996). Genetics and you. Totowa, NJ: Humana Press.

National Association of Social Workers. (1996). Code of ethics. Washington, DC: NASW.

Schild, S. (l966). The challenging opportunity for social workers in genetics. Social Work, 11(2), 22–28.

Schild, S., & Black, R. B. (Eds.). (l984). Social work and genetics: A guide to practice. New York, NY: Haworth Press.

Andrews, L., Fullarton, J., Holtzman, N., & Motulshky, A. (Eds.). (1994). Assessing genetic risks: Implications for health and social policy. Washington, DC: National Academy Press.

Collins, F., & Galas, D. (1993). A new five-year plan for the U.S. Human Genome Project. Science, 262, 1, 43-46

Giardiello, F., Brensinger, M., Petersen, G., Luce, M., Hylind, L., Bacon, J., Booker, S., Parder, R., & Hamilton, S. (1997). The use and interpretation of commercial APC gene testing for familial adenomatous polyposis. New England Journal of Medicine, 336, 823–827.

Hudson, K., Rothenberg, K., Andrews, L., Kahn, M., & Collins, F. (1995). Genetic discrimination and health insurance: An urgent need for reform. Science, 270, 20, 391-393.

Lapham, E., Kozoza, C., & Weiss, J. (1996). Genetic discrimination perspectives of consumers. Science, 274, 621–624.

Task Force on Genetic Testing. (1995, April). National Center for Human Genome Research factsheet. Bethesda, MD: NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications of Human Genome Research.

Task Force on Genetic Testing. (1995, September). National Center for Human Genome Research factsheet. Bethesda, MD: NIH-DOE Joint Working Group on the Ethical, Legal, and Social Implications of Human Genome Research.

U.S. Department of Health and Human Services and U.S. Department of Energy. (1990, April). Understanding our genetic inheritance. The U.S. Human Genome Project: The first years, 1991–1995 (Publication no. 90-159). Bethesda, MD: National Institutes of Health.

Contact: Alliance of Genetic Support Groups, 35 Wisconsin Circle, Suite 440, Chevy Chase, MD 20815-7015.