Genetics and Social Work — Making Sense of the Science
By David Surface
Social Work Today
Vol. 6 No. 4 P. 34

Many medical diagnoses have serious genetic implications, requiring professional counselors to decipher, evaluate, and assist in decision making.

When one thinks of the various skills and types of knowledge social workers need to serve their clients, genetics is not typically one of them. However, with the recent rapid advances in genetic knowledge, the line between genetics and social work, as with most other areas of human life, is growing thinner day by day.

Because every major advance in scientific knowledge has human repercussions, many of which are unforeseen by the scientists responsible for them, it’s not enough to simply interpret the meaning of scientific advances to the public. It’s also important to anticipate and prepare for what the emotional, social, and political effects of these advances may be.

With their firm grounding in psychosocial knowledge and advocacy, social workers are uniquely suited for helping the public cope with the avalanche of genetic information with which they are confronted. Social workers have been intimately involved in groundbreaking efforts such as the Human Genome Education Project, and the NASW recently issued their own set of standards for social workers involved in the field of genetic counseling.

Genetic Counselors and Social Workers: Complementary Roles
The field of genetic counseling is where helping the public deal with new genetic information takes place one-on-one—the couple having their fetus tested for a serious birth disorder, the woman who wants to discover whether she may one day be diagnosed with the same breast cancer that killed her mother—all are in need of the kind of psychosocial services social workers excel at providing.

While social workers may be intimately involved in genetic counseling, they are usually not genetic counselors themselves. This was not always the case.

“Until about 10 years ago, people with social work training who were able to fulfill certain kinds of clinical criteria in affiliation with clinical and academic programs were able to become certified as genetic counselors,” explains Sara L. Tobin, PhD, MSW, senior research scholar in the Center for Biomedical Ethics at Stanford. “But then that door closed.” Today, genetics counselors must come from an accredited genetic counseling program.

Today, social workers and genetic counselors work together in a complementary fashion. Genetic counselors typically work with clients in the genetics or prenatal departments of hospitals. After testing, genetic counselors may refer the client to a social worker if they believe the client needs further counseling and support.

“The genetic counselors are in the front line of working with the patients and sometimes couples, explaining the meaning and results of the test, then helping the couple discuss the implications of the results as well as engage in a decision-making process,” explains Israela Meyerstein, LCSW-C, LMFT, a marriage and family therapist in private practice. “Because the information comes back with different degrees of probability about the disease, these couples have to wrestle with some very morally difficult decisions without a lot of definitive information.”

Social Workers’ Advantage: The Psychosocial Edge
Although genetic counselors are highly trained in genetics, they also receive training in the social aspects of working with patients and families who are challenged by genetic diagnoses. However, the degree of psychosocial training they receive can vary greatly from school to school.

Some put great emphasis on psychosocial training in working with patients and families, while other programs are geared more toward research and statistics. Because of these variations in training, there is corresponding variation in genetic counselors’ ability to deal with family issues.

“But regardless of their training, there’s going to be sort of a line with some clients where a genetic counselor is not going to be able to deliver the kind of in-depth services that are needed by that particular client,” says Tobin. “At that point, genetic counselors are trained to refer out to appropriate services which certainly would include social workers.”

According to Meyerstein, there are many situations in which social work counseling is complementary to the experience of genetic testing, particularly in cases where the presenting problem may predate and be indicative of larger problems outside the testing experience.

“I’ve seen couples referred by a genetic counselor, who may have had a complicated marital relationship before the particular genetic crisis,” says Meyerstein. “They need counseling to help with areas in which they’re already in trouble. Also, a woman may already be depressed before she terminates a pregnancy due to some genetic information she’s received. Or an extended family may not be responding or supportive in the way that a couple needs while dealing with the emotional repercussions of genetic testing.”

Meyerstein notes that the profession of genetic counseling is becoming more oriented toward the counseling aspects of social work. “But they’re still limited by their context, the time frame with which they have to work with the couple,” says Meyerstein. “That leaves a wide role for social workers in the community to pick up where genetic counselors leave off.”

A lack of follow-up counseling time with clients can be especially problematic when the genetic diagnosis is particularly severe. Karin V. Little, MSW, of the Orange Caregiver Resource Center and the Huntington’s Disease Clinic at the University of California, Irvine Medical Center has seen the effects.

“To be diagnosed with Huntington’s disease can be devastating,” says Little. “I know that genetic counselors frequently don’t get the time that they need with the client after delivering a diagnosis like that. That is where social workers need to come in and walk them through the diagnosis they’ve just received and try to help them prepare for the future and deal with all of the emotional fallout right now, not only with the person who’s diagnosed, but with the family.”

The Anxiety of Knowing: Predicting Particular Disorders
While advances in medical science are typically meant to relieve human stress and suffering, this is not always the case, particularly when it comes to diagnosing illnesses. Due to advances in genetic technology, increasingly more people are able to know they’re at risk for a life-threatening disease while being unable to do anything about it. Hereditary cancer syndromes probably top the list of genetic disorders individuals and families face in the aftermath of genetic testing.

“The family dynamics of cancer are very significant,” says Tobin. “Because these are life-threatening disorders that go from one generation to the next, there’s a 50/50 risk of inheriting this gene and the risk of disease. People in these families have seen their mothers, aunts, and uncles die. I’ve heard people in these families describe themselves as waking up in fear every day.”

The life choices faced by clients with a family diagnosis of cancer can be especially difficult and require all of a social worker’s counseling skills. “Imagine a client who finds out that she has the gene for breast cancer in her family,” says Meyerstein. “The probability of her developing breast and other cancers in her lifetime is quite high, so she decides to have a double mastectomy as well as a hysterectomy. You can imagine the counseling a person in that situation might need.”

A genetic diagnosis is a double-edged sword, freeing some people from the fear of developing a dreaded disease, while burdening others with the near certainty of it.
Little facilitates a support group for families living with Huntington’s disease, a particularly severe genetic disorder. Working with that population, she’s seen the effects of a family genetic diagnosis.

“The sad thing is that the gene for Huntington’s is autosomal dominant, which means that if I have it, all of my children have a 50% chance of having it too,” explains Little. “Whereas if I had ALS [amyotrophic lateral sclerosis], my children may or may not develop that. Knowing that a disease is genetically transmitted may be freeing for some people, but for the families who have a family member with the disease, it can be overwhelming.”

Ethical Issues
Social workers counseling clients who are dealing with the results of genetic testing face a range of ethical concerns. Confidentiality is particularly important, especially when it comes to insurance companies and employers who may use genetic information to deny people coverage or employment.

Joan Weiss, ACSW, is director of The Genetic Alliance, codirector of the Human Genome Education Model Project, and on the board of directors of the National Coalition for Health Professional Education in Genetics. In her many roles, she’s had ample opportunity to observe and consider the complexities of ethics where genetic testing is concerned.

“If social workers are helping prepare their client for genetic testing, they have to keep in mind privacy and confidentiality issues related to insurance and employment,” says Weiss. “Another important issue is self-determination, allowing the client to select or refuse genetic testing or treatments. The client has the right to refuse to know genetic information. Everything should be voluntary.”

Tobin explains how social workers can stumble into thorny ethical areas that reach beyond the rights of their client. “I think social workers need to be cognizant of the extra issues of confidentiality about other members of the client’s family who they’re never going to see,” says Tobin. “Here you are a psychotherapist-social worker, and of course you’re going to discuss the client’s family members. But discussing medical information about those family members is kind of an extra step, and I believe extra care is called for.”

Genetic Literacy for All Social Workers: How Important Is It?
Obviously, social workers who normally see clients undergoing genetic testing need a certain amount of familiarity with the field of genetics. But what about other social workers who do not regularly encounter clients who are being tested? How important is it for all social workers to attain a certain amount of genetic knowledge? How may advances in genetics affect the social work field as a whole?

“That’s a hard question to answer,” says Little. “It might be overkill to more thoroughly educate social workers about genetic counseling because they have so many other areas that are pertinent to them—domestic abuse, substance abuse, death, and dying—so I don’t see genetic counseling as being particularly high on the list of what they need to be trained in.”

Weiss sees the applications of genetic knowledge for today’s social workers as more general and practical.

“The social worker should be familiar with the indications for DNA testing, particularly now with all the common diseases that are being found to have a genetic component. It isn’t just the rare disorders anymore,” says Weiss. “They have to be aware of what kind of resources are out there for their clients and when should they be concerned enough to refer them. This is true in whatever context a social worker is working in, whether they’re in prenatal situations where birth disorders are a concern, throughout school where diseases like sickle cell may appear, or in old age with the onset of Alzheimer’s.”

The most valuable genetic tool the average social worker has at his or her disposal, according to Weiss, is family history.

“Social workers should learn to incorporate the genetic history of their clients,” says Weiss. “Very few actually do it, I’m afraid to say—hopefully this will be done more and more. It’s important to go through at least three generations to look for things like alcoholism and mental illness, to alert the social worker that there may be a genetic component and it’s not just environmental.”

Weiss also believes taking a family history has value for the social worker-client relationship beyond mere information gathering. “The whole process of taking a family history strengthens the bonds of trust between the client and social worker,” she says.

Ultimately, Weiss encourages social workers to not be intimidated by the concept of genetics. “Social workers don’t have to become genetic counselors,” she points out. “They’re so afraid of anything that smacks of science. But they need to be familiar with what’s going on.”

— David Surface is a freelance writer and editor based in Brooklyn, NY.

Resources
Genetic Alliance, www.geneticalliance.org

NASW Standards for Integrating Genetics into Social Work Practice, available to order at www.naswpress.org

National Coalition for Health Professional Education in Genetics, www.nchpeg.org

National Society of Genetic Counselors, www.nsgc.org