The accelerating developments of new knowledge in genetic testing will also require expanded formal continuing education programs in clinical genetics, including those geared to the genetic counselor, primary care practitioner, and social worker (see Chapter 5). The Ethical, Legal, and Social Implications Program should coordinate with professional genetics organizations and the National Library of Medicine to develop genetics education and dissemination programs for interested health professionals. Genetics specialists should develop and provide continuing education and training for other professionals, as well as take a leadership role in genetics education for the public. Other health care professionals should also participate in programs intended to increase public awareness and education about genetics.
More minorities should be recruited for training programs in all aspects of clinical genetics. This will be especially important in providing culturally sensitive and appropriate genetic testing, education, and counseling services in the future (see above), when so-called minority groups will comprise a majority of the population of the United States (see Chapters 4 and 6).
The cost and financing of genetic testing and counseling have had a profound effect on access to these services in the United States. No matter what aspect of genetics is discussed, it is almost impossible to keep the discussion from turning to issues related to financing, in particular the role of health insurance in genetic testing and counseling (see Chapter 7). The United States is the only developed country in the world without a social insurance or statutory system to cover basic expenses for medical services for most of its population. This creates problems of access and equity, especially for those low-income or high-risk individuals who are self-employed, work part-time, or are employed by small businesses and who may not be able to afford or obtain health insurance. Over 37 million people are without health insurance coverage in the United States.
Even for those who have health insurance, coverage for most preventive, screening, and counseling services may be excluded. These limitations of health care coverage in the United States particularly affect genetic services, which have an important counseling component. Insurance reimbursement or other financing of genetic testing is not generally available now in the United States. The committee also heard testimony that individuals whose insurance does cover some or all genetic services may be reluctant or unwilling to file claims for such services. They may fear that the genetic information they sought might be used to evaluate and deny their future applications for health or life insurance coverage, or lead to higher premiums or limited coverage. And, because so much coverage in the United States is employment based, people may also worry that their employer will have access to the information and use it (overtly or covertly) to discriminate against them (see Chapters 7 and 8).