Genetic Data

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genetic data

Information given to adopting parents so they may provide appropriate care for the child. When the child is an adult, they may give him or her the information to assist with future plans, offspring which may be born and so forth.

Researchers asked social workers at public agencies in all 50 states if systematically collected genetic data should be shared with an adoptive family or with an adopted adult. Their results were reported in the January 1990 issue of the American Journal of Human Genetics. They also sought to define problems associated with collecting genetic data.

Follow-up data included there was an interest among the majority of the state agencies in developing a standard of genetic data. Many agency personnel indicated a strong need to receive information on genetics: 80% of the respondents expressed an "intermediate to great" need for education. The authors pointed to several existing programs. For example, a 1984 Wisconsin program was a one and one-half day program covering "Genetic Family History: An Aid to Better Health in Adoptive Children." A University of Colorado program created for public health nurses, "Genetic Applications: A Health Perspective," is considered appropriate for other "health professionals."

Many states have already addressed the issue of collecting genetic data. For example, in Wisconsin, the law mandates the collection of genetic information. In Arizona, California, Hawaii, Idaho, Iowa, Kansas, Louisiana, Maine, Minnesota, New Jersey, New York, Ohio, Oregon, South Carolina and Texas, state law requires that genetic information be requested by social workers.

Two potential problems in gathering and disseminating data were identified as maintaining confidentiality and gathering data for adoptive parents when the child was a foster child with an inadequate family history.

In their paper for adoption workers, Julia B. Rauch, Ph.D. and assistant professor at the School of Social Work and Community Planning at the University of Maryland, and Nancy Rike, M.S., M.S.W., and genetic counselor at the Greater Baltimore Medical Center, discuss why genetic services are important. They list primary reasons for collecting data and providing such data: to reply to adopting parents and answer their questions; to assist the social worker and the adopting parent in determining whether they can parent a child; to make adopting parents aware of potential health problems, such as cancer or diabetes, so they can provide good health care; to meet the information needs of children who are handicapped or ill; and finally to try to avoid wrongful adoption situations.

Information should be gathered from the birthmother on herself and as many other family members as possible, including both birthparents, grandparents, full and half-siblings and other family members. The authors recommend specific questions be asked and offer a "Family Genetic History" questionnaire.

Adopting parents should be told if the child has a genetic disorder or has a probability of developing a disorder, whether the disorder is medical, psychiatric, behavioral or another problem that could be inherited.

The authors also recommend that after the adoption, if birthparents discover genetic information that could impact the adopted child, they should provide such information to the agency. Conversely, if the adoptive parents discover the child has a disease or problem with a possible genetic link, they too should inform the agency so the birthparents can be notified. (See also GENETIC PREDISPOSITIONS; MEDICAL HISTORY.)

Diane Plumridge, Joan Burns and Nancy L. Fisher, "ASHG Activities Relative to Education. Heredity and Adoption: A Survey of State Adoption Agencies," American Journal of Human Genetics, 46 (January 1990): 208-214.

Julia B. Rauch, Ph.D., and Nancy Rike, M.S., M.S.W., Adoption Workers' Guide to Genetic Services, (Chelsea, Mich: National Resource Center for Special Needs Adoption, n.d.).

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