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ETHICAL & LEGAL ISSUES IN THE DIFFUSION OF GENETIC TESTS

道德

基本信息

批准号：
2721494
负责人：
NEIL A HOLTZMAN
金额：
$ 4.94万
依托单位：
JOHNS HOPKINS UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
1990
资助国家：
美国
起止时间：
1990-05-01 至 1999-04-30
项目状态：
已结题

项目摘要

During the next decade many genetic tests will become commercially available. A slow rate of diffusion of these tests prolongs inequity, as more people will not have access to them. If, however, diffusion outpaces the understanding of physicians offering the tests, or if they disregard concerns about autonomy and confidentiality, the chance of harm is increased. In this project, we will study factors influencing physicians' adoption of new genetic tests and their attitudes towards how tests should be provided. We will also study policies for developing and providing genetic tests and begin to explore consumer attitudes. By mailed questionnaire, we will compare physicians who have already offered a carrier test for cystic fibrosis to physicians who adopt the test while this study is in progress and to others who have not yet used it. We will examine the influence of physicians' knowledge of genetics and genetic tests, their perception of their patients' expectations regarding test use, their experience with and concerns about legal liability, and their sensitivity to whether their patients' insurance can pay for the test (or, if not, whether their patients can afford it) on whether they have actually used this test. By interviews and questionnaires, we will learn how major health care insurers decide when to include new innovative technologies, such as genetic tests, in their benefits packages and what factors influence their decisions. By a survey of biotechnology companies and clinical laboratories, we will explore policies and practices of organizations that are developing and/or providing genetic tests and the extent of genetic testing. The information will assist policy makers in deciding whether current statutes and regulations are adequate to assure safe and effective testing. By conducting focus groups of consumes with and without a family history of breast cancer, we will elicit patient attitudes toward autonomy under genetic test situations similar to those presented in the scenarios. We will also learn consumers' reactions to the ways physicians communicate information on genetic tests. Attitudes of African-American women toward genetic tests for breast cancer will be explicitly considered. The study will, therefore, identify the extent of departures from ethical norms in the diffusion of new genetic tests. It will suggest particular situations in which remedial educational interventions or policy changes could improve the safe and effective delivery of genetic tests.

在未来十年中，许多基因检测将商业化。 available.这些测试的扩散速度缓慢，更多的人将无法接触到它们。然而，如果扩散速度超过提供测试的医生的理解，或者如果他们无视对自主权和保密性的担忧，伤害的可能性是增加在这个项目中，我们将研究影响医生采用新的基因检测方法及其对如何进行检测的态度应提供。我们还将研究发展政策，提供基因测试，并开始探索消费者的态度。通过邮寄问卷，我们将比较已经提供了一个囊性纤维化的携带者测试，以医生谁采用测试，而这项研究正在进行中，并向其他人谁还没有使用了我们将研究医生的遗传学知识的影响和基因测试，他们对病人期望的感知关于测试使用，他们对法律的责任，以及他们对患者保险是否可以支付测试费用（或者，如果没有，他们的病人是否负担得起）他们是否真的用过这个测试通过访谈和问卷调查，我们将了解到如何主要的医疗保健保险公司决定何时纳入新的创新技术，例如基因测试，在他们的福利包和什么因素影响他们的决定通过对生物技术公司和临床实验室的调查，探索正在开发的组织的政策和实践和/或提供基因测试和基因测试的程度。的这些信息将有助于决策者决定目前是否法规和规章足以确保安全有效试验. 通过对有和没有家族史的消费者进行焦点小组调查，在乳腺癌中，我们将引出患者对自主性的态度，基因测试的情况类似于那些提出的方案。我们还将了解消费者对医生沟通方式的反应关于基因检测的信息非裔美国妇女对将明确考虑对乳腺癌进行基因检测。因此，这项研究将确定偏离道德规范的程度。新的基因检测的传播规范。它将建议特别补救性教育干预或政策改变的情况可以提高基因检测的安全性和有效性。