Developing genetic privacy legislation: the South Carolina experience.

The availability of presymptomatic and predisposition genetic testing has spawned the need for legislation prohibiting health insurance discrimination on the basis of genetic information. The federal effort, the Health Insurance Portability and Accountability Act (HIPAA) of 1996, falls short by protecting only those who access insurance through group plans. A committee of University of South Carolina professionals convened in 1996 to develop legislation in support of genetic privacy for the state of South Carolina. The legislation prevents health insurance companies from denying coverage or setting insurance rates on the basis of genetic information. It also protects the privacy of genetic information and prohibits performance of genetic tests without specific informed consent. In preparing the bill, genetic privacy laws from other states were reviewed, and a modified version of the Virginia law adopted. The South Carolina Committee for the Protection of Genetic Privacy version went a step further by including enforcement language and excluding Virginia's sunset clause. The definition of genetic information encompassed genetic test results, and importantly, includes family history of genetic disease. Our experience in navigating through the state legislature and working through opposition from the health insurance lobby is detailed herein.

The hospital CEO: meeting the conflicting demands of the board and physicians.

This article examines the relationship between the hospital CEO and the governing board and physicians in Canada. Conflicts that result from the interaction of the three groups are identified. A CEO requires technical, human, and conceptual skills to manage conflict effectively but can be successful with minimal technical or human skills by relying on subordinates for these skills. This article argues that survival of health care organizations in the 1990s will depend on CEOs with strong conceptual skills. Although some believe conceptual skills are innate, it may be possible to learn such skills through coaching or mentoring.

Prospective evaluation of the CRAMS scale for triaging major trauma.

In order to effectively implement a community-wide trauma system, a mechanism of field triage is required. This process of triage should be simple to use and should accurately identify patients who are in need of level I trauma facility care. It should also allow the less critically injured to be cared for at the local hospital of their choice or at the nearest community hospital. The CRAMS (Circulation, Respiration, Abdomen, Motor, Speech) scale was prospectively studied as a potential triage tool by using it to score patients in the field and then comparing their scores to their emergency room dispositions and final outcomes. The CRAMS scale was easy to apply and accurately identified both the critically injured who should be triaged to a Level I center and the less critically injured who can be adequately cared for by Level II and III centers.

Outcome of critically injured patients treated at Level I trauma centers versus full-service community hospitals.

Critically injured patients were identified by a CRAMS (circulation, respiration, abdomen, motor, speech) score of 6 or less while still in the field. They were prospectively followed as they received their care at the nearest medical facility according to the then-existing district Emergency Medical Services protocols. Those cared for by Level I trauma centers had a significantly reduced mortality rate compared to those treated at the other large full-service community hospitals. The commitment to Level I trauma care improves outcome of the critically injured, and field triage of the critically injured patient to these centers is indicated.

ASHG/NSGC activities related to education. The doctoral degree in genetic counseling: attitudes of genetic counselors.

All 565 full members of the National Society of Genetic Counselors were surveyed in September 1989 to assess their attitudes toward a potential doctoral degree in genetic counseling. The usable return rate was 59.6% (337/565) of the full membership. One hundred eighty (54.4%) respondents indicated a need for a doctoral degree in genetic counseling, 101 (30.5%) were undecided as to the need, and 50 (15.1%) did not see a need for such a degree. One hundred forty-seven (44.3%) respondents indicated their individual interest in pursuing a doctorate in genetic counseling, 109 (32.8%) would not pursue such a degree, and 76 (22.9%) were undecided. Beyond the generally accepted feeling that genetic counseling should expand as a professional field, the reasons cited most often for seeking the Ph.D. in genetic counseling were professional recognition, a desire to specialize in a particular area, and greater depth of knowledge. The study revealed a strongly positive attitude, among full members of the NSGC, toward establishment of a doctoral degree in genetic counseling.

Effect of surface-attached heparin on the response of potassium-selective electrodes.

Heparin (or hydrolyzed heparin) was covalently attached on the surface of derivatized cellulose triacetate membranes, which were subsequently impregnated with the potassium-selective ionophore valinomycin. The resulting ion-selective electrodes presented near-Nernstian response to potassium and had selectivity coefficients of the same order of magnitude as those of conventional poly-(vinyl chloride)-based electrodes. It was found that the heparin layer does not alter significantly the response characteristics of the electrodes. The biological activity of the immobilized heparin (or hydrolyzed heparin) was measured in terms of its inactivation of blood coagulation factor Xa. It was found that the covalently anchored hydrolyzed heparin was not biologically active, but the immobilized heparin was able to inactivate factor Xa. Therefore, by covalently attaching heparin on the surface of ion-selective electrodes, electrodes with improved blood compatibility characteristics may be prepared.

Basic principles of cancer genetics.

All cancer can be described as genetic, that is, due to altered DNA. Many of these mutations will be accumulated during the normal division of cells. However, some people may inherit abnormal genes, which predispose those individuals to high risk of certain malignancies. These individuals can sometimes be identified as having a family history of affected individuals, some of which might have early age of onset or multiple malignancies. Specific genes have been identified as being associated with certain of these malignancies. The hereditary cancers include (but are not limited to) ovary, breast, colon, endometrium, and to a lesser extent, prostate, skin and pancreas. Some of these cancer predisposing genes are highly penetrant with up to 80 to 90 percent of gene carriers developing the associated malignancy within a 70 year life expectancy. Molecular testing for the presence of cancer predisposing genes is available for many of the hereditary syndromes. While there currently is no way to correct a mutant gene, early detection and some techniques of chemoprevention are of clinical value. People who fear that they are at high risk only learn that they are not, can benefit from the relief of anxiety through the genetic counseling process.

Family history in ovarian cancer referral population.

In order to determine the incidence of familial and hereditary ovarian cancer in a referral patient population, we conducted a retrospective study of 44 patients from a consecutive set of 62 patients treated for ovarian carcinoma at the Gynecologic Oncology Clinic at the Richland Memorial Hospital Center for Cancer Treatment and Research between January 1, 1993 and December 31, 1993. In our study of the referred patients, only two (4.55%) reported a history of at least one first-degree relative also being affected with ovarian cancer. However, 13 patients (29.55%) reported a family history consistent with one of the hereditary ovarian cancer syndromes. In addition to having a suggestive family history, these 13 families demonstrated several cardinal features of hereditary cancer syndromes including early onset, bilaterality, multiple primary tumors, and transmission. Race was the only significantly different demographic factor between the hereditary and sporadic ovarian cancer groups. All 13 patients who appeared to have a hereditary form of cancer were Caucasian.