ETHICAL & LEGAL ISSUES IN THE DIFFUSION OF GENETIC TESTS

道德

• 批准号: 3333051
• 负责人: NEIL A HOLTZMAN
• 金额: $ 33.5万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 1990
• 资助国家: 美国
• 起止时间: 1990-05-01 至 1994-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/3333051
• 关键词: biotechnology; diagnosis design /evaluation; diagnosis procedure safety; diagnosis quality /standard; diagnosis service; ethics; female; genetic disorder diagnosis; health care personnel performance; health related legal; health surveys; interview; malpractice /misconduct; prenatal diagnosis; questionnaires

Tests for common as well as rare genetic disorders will proliferate as more of the human genome is mapped. In addition to predicting those at risk for future disease, genetic tests can detect those at risk of having affected offspring, and, by prenatal diagnosis, the affected offspring as well. Such identification permits couples the options of avoiding the conception or birth of affected offspring. By these means as well as by presymptomatic interventions, genetic tests can result in reducing the burden of disease. However, some people's religious and ethical beliefs and concern for personal autonomy will lead them to reject testing. The objective, and rapid diffusion of genetic tests without infringing on personal autonomy and without neglecting those with rare diseases. With an insufficient number of trained geneticists to provide tests, non- geneticist physicians--including obstetricians, pediatricians, internists, and psychiatrists--will be involved in genetic testing. In this project, the knowledge of, and attitudes toward, genetic testing of physicians and master's level genetic associates will be determined. The law has already been used to mandate genetic screening, thereby undermining individual autonomy. Courts have held physicians liable for not performing genetic tests, thereby exerting pressure on other physicians to provide tests. A retrospective analysis of malpractice cases involving genetic technologies and those involving other technologies will determine whether courts have used different factors in deciding genetic compared to non-genetic cases. Current legislators and judges will be surveyed on their attitudes toward the use of law to alter the rate of diffusion of genetic tests. Many genetic tests are performed in university laboratories and offer little financial reward. Mapping of the human genome has already stimulated commercial interest. The extent to which commercial support of scientists working in universities as well as in industry influences the sharing of research findings and interest for rare diseases will be determined.

对常见和罕见遗传疾病的检测将随着更多的 人类基因组的部分被绘制出来。除了预测那些有风险的人 在未来的疾病中，基因测试可以检测出那些有感染风险的人 子代，通过产前诊断，受影响的后代也是如此。 这样的身份识别允许夫妇选择避免受孕 或受影响的后代的出生。通过这些手段以及通过 症状前干预，基因测试可以导致减少 疾病的负担。然而，一些人的宗教和伦理信仰 而对个人自主权的担忧将导致他们拒绝测试。这个 客观、快速地传播基因检测而不侵犯 个人自主性，而不忽视那些患有罕见疾病的人。 由于没有足够数量的训练有素的遗传学家提供检测，非 遗传学家--包括产科医生、儿科医生、内科医生、 以及精神病学家--将参与基因测试。在这个项目中， 医生和医生对基因检测的知识和态度 硕士级别的遗传伙伴将被确定。 这项法律已经被用于强制进行基因筛查，因此 破坏个人自主性。法院要求医生对 不进行基因测试，从而对其他医生施加压力 来提供测试。涉案医疗事故的回顾分析 基因技术和涉及其他技术的技术将决定 法院是否使用了不同的因素来裁决基因与 非遗传性病例。现任立法者和法官将接受关于 他们对利用法律改变病毒传播速度的态度 基因测试。 许多基因测试都是在大学实验室进行的，并提供 很少的经济奖励。绘制人类基因组图已经 刺激了商业利益。商业支持的程度 在大学和工业界工作的科学家影响着 分享罕见疾病的研究成果和兴趣将是 下定决心。