A milestone in civil rights was achieved last May when President Bush signed into law the Genetic Information Nondiscrimination Act (GINA).
NASW and dozens of other health, mental health and civil rights organizations cheered the news that individuals would soon be given federal protections against genetic discrimination in health insurance and employment.
While the new law is groundbreaking, social workers and other health professionals are being encouraged to maintain vigilance in protecting their clients' rights in the complex world of genetic science.
"Genetic testing is ever-evolving," said Sharon Terry, president and CEO of Genetic Alliance, which, among its goals, convenes diverse stakeholders in advocacy for genetics. "As we learn more about familiar risks, predispositions and other family-related health issues, there will be important reasons to help families cope with all of the issues surrounding this new awareness," she said.
The new law means people can get tested without the fear of being dropped from their insurance company or having their premiums raised. It also means a family no longer has to worry about being unfairly treated because of the discovery of a rare disorder.
"This is a huge success," said Social Work Pioneer® Joan Oppenheimer Weiss, a leader in the field of genetics and social work. "I am proud that NASW has lobbied for this. It's a thrilling thing to happen." For decades, Weiss has advocated for individuals with genetic disorders. She was a founder and first executive director of the Alliance of Genetic Support Groups, a major umbrella group for voluntary genetic organizations across the country.
Weiss said another important benefit from the new law is that people may enter research studies without the fear of having the results discovered by insurance companies.
Early Efforts. Social work leaders understood years ago that the profession needed to be an important participant in the latest advancements of genetic decoding and the ability to uncover components of common diseases such as Alzheimer's, diabetes, cancer, heart disease, mental illness, and even behavioral characteristics. Social workers realized that as science has raced to unmask certain genetic codes and introduced the ability to test a person for certain diseases, such breakthroughs come with questions. How will such discoveries impact society, as well as a person's right to privacy and civil rights? Then come the psychological implications for people who opt for testing - and the question of whether to test at all. According to the NASW Web education course, "Understanding Genetics: The Social Workers Role," produced in 2007, there are risks to testing:
- For healthy individuals, the psychological impact of future health problems can be traumatic.
- There may be no medical interventions possible to help someone found to be at risk for a particular genetic condition.
- Test results can be inconclusive or uninterpretable.
- Test results' indication of the presence of a gene mutation do not provide information on if and when the condition may develop, as well as how severe it may be, creating undue anxiety.
- Sometimes testing can identify risk for more than one condition, which can present ethical challenges.
The social worker's role in encouraging clients to become their own advocates in bringing genetic issues to the forefront of quality health care was being defined in part by the completion of the Human Genome Project, the international effort to map and sequence all the genes in the human body. The Human Genome Education Model project was co-chaired by two social workers. This resulted in workshops and training programs in genetics for social workers and other disciplines across the country from 1997 to 2001. Another important step for the profession occurred in 2003: NASW issued the NASW Standards for Integrating Genetics into Social Work Practice. In the document, the authors, including Weiss, explain that genetics is the study of single genes and their effects, while genomics is the study of functions and interactions of all genes in the genome.
"A social worker is often the first to provide psychosocial services to individuals and families with genetic disorders," the Standards pointed out. "It's imperative that social workers become more aware of the ethical, legal and psychosocial implications of a genetic diagnosis, genetic testing and genetic research in order to empower individuals and families to speak out for their rights as public citizens."
The Standards go on to state that without specialized training, it is inappropriate for social workers to assume the role of genetic counselors, but they have important contributions to make within the social work scope of practice.
A policy statement on genetics was adopted at the 2005 Delegate Assembly and published in the January 2006 edition of Social Work Speaks. The policy statement pointed out that people most often seek genetic testing for one of four reasons: for a diagnosis to determine if they currently have a particular disorder; for asymptomatic testing to determine if they have a particular gene disorder that will manifest itself in the future; for prenatal planning to determine if they carry the gene(s) for a particular disorder that may affect future generations; or to determine whether they are susceptible to a particular disorder in the future. Each of these carries unique psychological implications for an individual and his or her family, the policy statement explained.
The NASW Code of Ethics acknowledges the complexity of ethical dilemmas in genetic testing.
While several ethical standards apply to genetic practice, two are especially relevant, according to Social Work Speaks. They are informed consent and confidentiality. The ability to gain knowledge of one's genetic makeup or a family member's genetic makeup carries significant risks. A genetic test may alert people about the prevention, treatment, and cure of some disorders, but currently the ability to test for a genetic disorder often exceeds science's ability to prevent, treat and cure genetic diseases.
Future of genetics. Even though citizens will be protected against genetic discrimination in health insurance and employment, social workers need to know the profession will continue to play a key role in helping clients navigate the world of genetic science, testing and their psychosocial implications.
Weiss said concerns remain about how GINA will be tested in real world scenarios.
"While the law provides protection, it's not protecting people who participate in life, disability or long-term care insurance, so we have a ways to go," Weiss said. "It's a wonderful start and wonderful organizations have been working on this for decades, but there is still concern."
Phyllis Black is the director of the Lehigh Valley Campus of the Marywood University School of Social Work. Black said her interest in genetics started when she became involved with a group studying genetics and pediatrics at Johns Hopkins Hospital. She is also among the authors of NASW Standards for Integrating Genetics into Social Work Practice.
Black said the latest development in genetics is a good thing, but legal, ethical and social challenges will remain. "Social work has a dual commitment to the individual well-being and social change," she said. Social workers can provide psychosocial counseling to the individual and his or her family. For example, a social worker can assist people in deciding whether to undergo testing and to provide support and counseling in helping people cope with the results, she said.
Black said that genetics and testing will eventually affect clients of social workers regardless of their field of interest. "The need for social work involvement in genetics goes way beyond those practitioners who are employed in medical settings and there must be a clarion call for all social workers to be alert to genetic issues in their practice," Black said.
Despite GINA, challenges remain for social workers that involve ethical and social issues, Black said. One example is access to genetic testing. Currently, most insurance companies do not cover the cost. Access to treatment as it evolves will likely have similar constraints, Black said.
Weiss pointed out that as testing becomes more widespread for people who want to know about their genetics, it's important that the general public avoid questionable outfits that claim they can provide a person's genetic makeup for a small fee. A good place for social workers to find answers to their questions about genetics is by visiting the Genetic Alliance Web site.
"There are links to genetics counselors and there are good referral services and other links," she said.
Weiss said social workers need to safeguard policy on genetic information and make sure testing and access to treatment is available for all. "We have to protect the right to know and the right not to know," she said. "And we still have to be concerned about the ethical issues. Social workers have to listen to their clients and remember that genetics is a family diagnosis." Weiss said a social worker is often the first to provide psychosocial services to an individual and his or her family with genetic disorders. She said there are only around 20,000 genetic counselors in the U.S., compared to around 600,000 social workers. Social workers can help their clients by being aware of any genetic centers or counselors in their area, Weiss said.
Overall, Sharon Terry of the Genetic Alliance said, genetic discrimination is much less of a threat, thanks to GINA. For health insurance, GINA becomes effective May 21, 2009; for employment, GINA is effective Nov. 21, 2009.
"If a social worker has clients who believe they are being discriminated against, they can bring their complaint to the U.S. Equal Employment Opportunity Commission (EEOC), or come to the Genetic Alliance for help," Terry said.
NASW members can also learn more about genetics and social work by viewing a "Legal issue of the month" report about GINA, which provides explanations of the bill's provisions.
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