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.

A citizens' AIDS Task Force: overcoming obstacles.

This article analyzes the experience of a state-wide Task Force on AIDS using grassroots techniques to construct policy responsive to the needs of people living with HIV. The four primary obstacles to effective policy making were the need (1) to include disenfranchised groups; (2) to avoid the domination of governmental bureaucracy so that community-based organizations could offer solutions, as well as services; (3) to overcome resistance to anonymous testing; and (4) to reach "hard to reach" populations. Task Force members' perspectives colored what were deemed appropriate policies. Members tended to polarize into two groups: those community-based groups and individuals who focused on the needs of people with HIV on one side, and on the other side, more institutional players who wanted to identify and isolate "HIV carriers." The article closes by analyzing the resulting HIV Omnibus Bill. Those who focused on the needs of people with HIV seized the opportunity to draft and successfully pass an omnibus bill through the Arizona Legislature. This success demonstrates that highly organized communities can affect policy making, even to the extent that it offsets more institutionalized power.

Use of eluent containing surfactant for the liquid chromatographic analysis of porphyrins by direct serum injection.

A gradient elution reversed-phase high-performance liquid chromatographic method was developed for the direct serum injection analysis of porphyrins based on the use of eluent containing an anionic surfactant (sodium dodecyl sulfate) at a concentration below the critical micelle concentration to elute the serum proteins at the column void volume. Separation and detection performances were tested with a mixture of porphyrin standards containing uro-, heptacarboxylic-, hexacarboxylic-, pentacarboxylic-, copro-, zinc proto- and mesoporphyrin in a model serum consisting of 50 mg/ml bovine serum albumin. Average limit of detection is 0.06 pmol with a 10-microliter injection volume using fluorimetric excitation at the Soret band of porphyrins. The utility of this method for the direct serum injection analysis of porphyrins in human serum was evaluated by investigating serum samples from individuals suffering from iron-deficiency anemia and breast cancer.