Assessing Genetic Risks Implications for Health and Social Policy (1994) / Chapter Skim
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6 Personnel Issues in Human Genetics
6 Personnel Issues in Human Genetics
Pages 202-233
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From page 202... ...
This exciting and challenging prospect for the future involves a large pool of potential personnel for genetic testing, screening, education, and counseling, but will they be prepared to play this role? How will primary care practitioners be trained to provide these services appropriately and to understand the complexities and limitations of genetic tests?
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From page 203... ...
GENETIC SPECIALISTS Many types of professionals provide specialized genetic services: physicians, Ph.D. clinical geneticists, genetic counselors, nurses, and social workers.
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From page 204... ...
Given the current number of practicing genetic counselors in the United States today, this translates to 17 weeks per year from each genetic counselor just to serve CF-related clients. This study concluded that CF screening could not be offered solely through specialized genetics centers; it is likely that this and genetic tests of significance in making reproductive decisions, such as carrier screening, will be offered increasingly by obstetrician-gynecologists.
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From page 205... ...
geneticists is likely to be involved in human genetics and genetic testing and screening as part of research programs; however, most Ph.D.'s will not be providing traditional genetics services or practicing in traditional medical genetics settings. Since they do not have the clinical training required for some aspects of medical genetics, Ph.D.'s have often been discouraged from entering medical genetics.
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From page 206... ...
. As genetic tests for presymptomatic and predispositional assessment become more widely available, therefore, there may not be enough physicians framed to provide the necessary specialized genetics services, including the education and genetic counseling that will be essential if and when more widespread genetic testing and screening develop in the future.
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From page 207... ...
in Medical Genetics Genetic Counseling Training Site FIGURE 6-2 Number of training programs and genetic counseling training sites accredited by the American Board of Medical Genetics (AMBG)
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From page 208... ...
of % of Certificates Diplomatesa Clinical biochemical 57 24 2648b155 9 Clinical cytogenetics 125 71 10063359 22 Genetic counseling 169 143 177141630 38 Clinical genetics 286 127 111136660 40 Ph.D. medical genetics 56 31 2613126 8 Total 693 396 4404011,930 aPercentage of total number of diplomates (N = 1,639)
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From page 209... ...
The Asilomar conference recommended a minimum curriculum at the master's level that includes seven specific didactic course work content areas, as well as a broad scope of clinical experience; these include principles and application of human genetics and related sciences; 2. principles and practice of clinical and medical genetics; 3.
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From page 210... ...
Expenence in several additional areas was deemed desirable, but not mandatory, for minimum clinical experience, including service delivery, screening programs, cross-cultural issues, community and professional education, and clinic administration. Master's-level genetic counselors receive specialized multidisciplinary training and experience to prepare them for counseling related to a wide variety of genetic disorders, including late-onset adult disorders, as well as birth defects.
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From page 211... ...
provides no financial support for the training of genetic counselors or for improving genetics education in medical schools (Holtzman, 19891. However, the Maternal and Child Health Program of DHHS's Health Resources and Services Administration provides support to the Council of Regional Networks for Genetic Services (CORN)
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From page 212... ...
A number of programs have been developed to train non-master' e-level educators or counselors (see Box 6-31. Advocates for the use of single-disorder counselors cite the limited number of practicing genetic counselors and the increasing development of genetic testing as reasons to support this type of training.
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From page 213... ...
However, with the increasing Southeast Asian population in California, the need for multilingual individuals to provide state-supported genetic services is increasing. Actual job titles of such individuals vary according to their role or function and include, but are not limited to, single-gene counselor, single-disorder counselor, hemoglobin trait counselor, sickle cell educator, sickle cell counselor, genetic counseling aide, genetics educator, and genetic interpreter.
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From page 214... ...
ABMG, the Canadian College of Medical Geneticists, also provides certification in clinical genetics, Ph.D. medical genetics, cytogenetics, biochemical genetics, and molecular genetics, but not for genetic counselors.
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From page 215... ...
clinical geneticists will be able to set fees, be reimbursed by insurance companies, and not be under the supervision of an M.D. Genetic counselors who were not already certified by the ABMG have established an American Board of Genetic Counseling.
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From page 216... ...
GENETICS INSTRUCTION IN MEDICAL SCHOOLS Increasingly, primary care physicians will be called on to interpret tests results, relay this information to the patient in an accurate and sensitive manner, and deal with the sometimes profound impact such information can have on the patient's psychological well-being. Attention to genetics education in the nation's medical schools has not increased to meet this growing demand (see Box 6-5~.
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From page 217... ...
The challenge for medical education is how to proceed from the facts of reductionism, with its arcane language of acronyms, letters and numbers, through the many levels of integration by which these fundamental units coalesce into the systems that inform the unity of the organism. Genetics courses given to first and second year students should serve two missions; to teach the rudiments of genetics to students with variable background, and at the same time to make clear that there is such a thing as medical genetics as a separate entity.
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From page 218... ...
A review of curricula for 1992 showed that more medical schools are including some human and medical genetics in their curriculum in required courses (AAMC, 19911. Some progress has been made in increasing physicians' knowledge of genetics and genetic testing and their ability to take good family histories, particularly in specialties that involve more genetic tests (e.g., pediatrics and obstetrics)
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From page 219... ...
· Lisle progress had been made since the previous survey reported in 1981 in improving the position of genetics in the medical school curriculum. 1989: In response to the results of the 1985 survey, a multidisciplinary task force of members of the American Society of Human Genetics was convened to examine the challenges of teaching human genetics in medical schools (Graham et al., 1989~.
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From page 220... ...
Continuing Medical Education Continuing education credits for physicians wanting to learn more about medical genetics have been in existence for some time. Many medical centers offer courses, as do specialized centers such as the Jackson Memorial Laboratories in Bar Harbor, Maine, and the annual March of Dimes birth defects meetings.
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From page 221... ...
Cystic fibrosis 2. Physical examination: Physical characteristics that may indicate associated genetic disorders a.
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From page 222... ...
Medical history d. Genetic screening e.
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From page 223... ...
The clinical "need to know" may be the best motivator for genetics education. As more genetic tests are available, the need to know will inevitably grow.
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From page 224... ...
provide essential genetic counseling and support services. Other health professionals now playing or likely to play a critical role in providing genetic services include nurses, social workers, and public health workers.
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From page 225... ...
A small number of nurses, particularly those in maternal and child health nursing, have been certified in genetic counseling by the ABMG (Foreman, 1988; OTA, 1992b)
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From page 226... ...
Didactic course work in both human and clinical medical genetics is required, including: · patterns of inheritance · population genetics · prenatal diagnosis · cytogenetics · pharmacogenetics · genetic counseling · immunogenetics · chromosomal disorders · ethical, legal, and social · biochemical genetics · Mendelian disorders issues in genetics · developmental genetics · congenital malformation Although genetics is generally a part of the nursing school curriculum, but again, programs vary (Foreman, 1988~. Of the 200 universities in the United States that offer graduate degrees in nursing, only four have established programs providing a master's-level major in genetics (Foreman, 1988~.
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From page 227... ...
FINDINGS AND RECOMMENDATIONS As the availability of genetic tests increases and testing becomes more commonplace, it is likely that genetic testing will follow the path of other technological innovations in health care, and will be ordered and interpreted by primary care physicians, including pediatricians, obstetrician-gynecologists, internists, and general practitioners. There seems to be no prospect, in the foreseeable future, of having enough highly specialized genetics personnel to handle all genetic testing, including essential genetics education and genetic counseling.
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From page 228... ...
The committee recommends that genetic counseling and education be considered essential components of the standard of care, not only for specialized genetics personnel, but also for physicians, particularly primary care practitioners, who offer and interpret genetic tests. The committee endorses the core content areas identified by the ASHG task force, particularly the inclusion of ethics.
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From page 229... ...
. To ensure that genetic tests are administered in an appropriate manner, the committee recommends · reform of the education of physicians and other health professionals who are not trained as geneticists to include increased attention to basic genetics; · in particular, training of medical students to deal with the sensitivities of genetics education and the need for nondirectiveness, especially in counseling about reproductive options and about disorders for which no treatment exists; · reform of medical education should begin to incorporate a genetic point of view throughout its curriculum to enable physicians to recognize that human variability exists in the pathogenesis of human disease; · training for genetics professionals and others o~er`P-g or refemng for genetic testing in the ethical, legal, and social issues surrounding genetic diagnosis, testing, and screening; · training for laboratory personnel in order to understand the complexities of genetic testing so as to adequately interpret tests with a knowledge of test limitations and a sensitivity to the social issues surrounding genetic testing; · more research on knowledge of genetics and skills needed for genetics education and genetic counseling among all of the professional groups discussed in this report so that proper reforms can be implemented, and · establishment of basic proficiencies in genetics for physicians, nurses, and social workers.
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From page 230... ...
. The committee believes that the NLM is an excellent mechanism for providing access to critical information on genetics and recommended criteria for genetic testing, genetic counseling, and follow-up care to members of ACP and other interested professional groups.
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From page 231... ...
1987. Letter to the editor: Survey of medical genetics personnel.
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1991. ASHG/NSGC activities related to education: The doctoral degree in genetic counseling: Attitudes of genetic counselors.
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1991. Do we have a shortage of genetic counselors in New York State?
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