CONFIDENTIALITY, PRIVACY AND INSURANCE

该项目的目的是提供有关以下方面的经验数据： 价值观，信仰，和人的经验（或家庭成员） 有遗传性信息隐私问题的人， 获得医疗保险。然后将分析这些数据， 对公共政策的规范和法律的影响。使用十字架- 采用横断面设计，通过对300名 受遗传疾病影响的人或其家庭成员。作为 相比之下，100名艾滋病毒感染者和100名糖尿病患者或 他们的家人亦会接受访问。参与者将被要求 关于他们对谁能获得医疗服务的信念的问题 在什么情况下的信息，他们的经验， 医疗信息披露，他们担心潜在的有害 披露，以及他们对限制获得医疗服务的价值 信息和让政府保护他们免受不必要的伤害 关于这些信息的隐私损失。问题也将 在获得保健服务方面的具体经验 保险以及他们的就业选择与 确保或维持健康保险福利。获得的数据 这一项目将在实质上帮助决策者实现 在个人的隐私利益和 公众对可能产生的健康益处的兴趣 人类基因组计划。通过识别特定的关注点和价值观 关于个人（或家庭成员）的机密性和隐私 受遗传疾病影响的人（或家庭） 其他疾病患者、决策者 将能够更好地开发适当的用途和保障措施， 遗传信息。

The purpose of this project is to contribute empirical data concerning the values, beliefs, and experiences of persons (or family members of persons) with genetic conditions regarding informational privacy and access to health insurance. These data then will be analyzed for their normative and legal implications for public policy. Using a cross- sectional design, data will be obtained by personal interviews with 300 persons affected by genetic conditions or their family members. As a comparison, 100 persons affected by HIV and 100 persons with diabetes or their family members also will be interviewed. Participants will be asked questions concerning their beliefs about who has access to medical information under what circumstances, their experiences concerning medical disclosure, their fears concerning potentially harmful disclosure, and the value they place on restricting access to medical information and on having the government protect them against unwanted losses of privacy with respect to such information. Questions also will be asked concerning specific experiences regarding access to health insurance and the relationship between their employment choices and securing or maintaining health insurance benefits. Data obtained from this project should materially assist policy makers in effecting the necessary balance between the privacy interests of the individual and the interest of the public in the health benefits likely to emerge from the Human Genome Project. By identifying the particular concerns and values about confidentiality and privacy of individuals (or family members of individuals) affected by a genetic disease as well as persons (or family members of persons) living with other medical conditions, policy makers will be better positioned to develop appropriate uses and safeguards of genetic information.