Interpretation and use of genetic information by clients depends somewhat on their personality traits and characteristics. Clients come from a variety of sociodemographic and ethnocultural backgrounds that shape their beliefs, values, and available resources. Clients also may belong to affected families who have experience with a condition under discussion. Others may not have had experience with it. These variables shape client needs, attitudes, and priorities. Genetic counseling necessitates assessment of these variables in order to tailor the information and counseling to meet client needs. A couple with two children affected with cystic fibrosis that faces a decision about prenatal testing with a subsequent pregnancy is expert on the disorder and its impact on the family. A couple who is found to be at increased risk for having a child with cystic fibrosis based on carrier screening with no family history of the condition may have little idea of what having an affected child may mean for the child or themselves. Genetic counseling would differ in meeting the needs of these clients, even though at face value, each involves a fetus at 25 percent risk for being affected with the same condition, cystic fibrosis.
Since genetic conditions affect families, there may also be differences in how relatives view or use genetic information. Genetic counselors working with various family members have obligations to protect the privacy of individual clients and to support different decisions made within the same family. The offer to undergo predictive genetic testing, for instance, may result in some individuals who are interested and others who are not. Yet test results for one relative may reveal the at-risk status of another. So protecting personal testing decisions within families can be challenging. Genetic counseling aims to help relatives anticipate such consequences prior to undergoing testing. Rarely family members may choose not to reveal risk of a genetic condition to relatives. In this circumstance, genetic counselors may be persuasive in encouraging clients to notify their relatives so that each at-risk person may be informed and equipped to make his or her own decision about whether or not to undergo genetic testing. There is debate about the duty of genetics providers to warn at-risk relatives in situations where family members choose otherwise.
As more genetic discoveries emerge and genetics medicine moves into an era in which diagnoses are refined by genetic information, more tests are developed, and treatments tailored, all healthcare providers will need to understand some aspects of medical genetics. Nurses, primary care physicians, and even social workers and psychologists will be faced with helping clients to make decisions about using new genetic technologies. This sea change suggests a significant need for professional genetics education to prepare a variety of healthcare providers to care for clients in the future. Genetic counselors are important providers for helping to train others. In the meantime, it is important that clients who encounter new genetic technologies have access to appropriately trained and certified genetics providers. As genetic testing is increasingly utilized as a tool for medical management and not merely as a means to obtain risk information, there is likely to be less psychological turmoil for clients in making decisions about undergoing testing. However carrier testing or pre-symptomatic testing for serious, late-onset disorders without medical treatment will continue to elicit strong thoughts and feelings from clients. Certain genetic testing will continue to need to be accompanied by psychoeducational genetic counseling provided by well-trained clinicians to facilitate personal decision making. As the number and background of professionals involved in genetic testing expands, there is a greater potential threat to well-informed decision making. The maintenance of a high training and practice standard for genetic counseling is a priority in anticipating some of the consequences of the diffusion and proliferation of genetic testing.
Genetic counseling has evolved rapidly in its short history from the reproductive arena to pediatric and adult genetics clinics and more recently into common disease clinics. With this expansion, its goals have become more diverse and specific to the setting. As genetics medicine further emerges and new genetic tests are introduced, promoting informed choice about use of genetic tests will continue to necessitate pre-test genetic education and counseling. Ethical controversies related to duty to warn relatives, risks to the confidentiality of genetic information, and conflicts of interest related to commercial incentives for testing will expand and policies and even legislative protections will emerge.
BARBARA BOWLES BIESECKER (1 995) REVISED BY AUTHOR
SEE ALSO: Autonomy; Beneficence; Confidentiality; Eugenics; Family and Family Medicine; Genetic Counseling, Ethical Issues in; Genetic Discrimination; Genetic Testing and Screening; Professional-Patient Relationship
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