ETHICAL & LEGAL ISSUES IN THE DIFFUSION OF GENETIC TESTS

道德

• 批准号: 3333052
• 负责人: NEIL A HOLTZMAN
• 金额: $ 31.41万
• 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/3333052
• 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.

常见和罕见遗传疾病的检测将随着越来越多的 绘制了人类基因组图谱。 除了预测那些有风险的人 未来的疾病，基因测试可以检测出那些有风险的影响， 后代，并通过产前诊断，以及受影响的后代。 这种身份确认允许夫妇选择避免怀孕 或受影响后代的出生。 通过这些手段， 症状前干预，基因检测可以减少 疾病负担。 然而，有些人的宗教和道德信仰 对个人自主性的关注会导致他们拒绝测试。 的 基因检测的客观和快速传播， 个人自主权和不忽视那些罕见的疾病。 由于没有足够数量的训练有素的遗传学家提供测试， 遗传学医生--包括产科医生，儿科医生，内科医生， 和精神病学家--将参与基因检测。 在本项目中， 医生对基因检测的知识和态度， 将确定硕士级的遗传伙伴。 这项法律已经被用来强制进行基因筛查， 破坏个人自主权。 法院认为医生有责任 不进行基因测试，从而对其他医生施加压力 提供测试。 医疗事故案例的回顾性分析 基因技术和涉及其他技术的技术将决定 法院在决定基因方面是否使用了不同的因素， 非遗传病例 现任立法者和法官将接受调查， 他们对使用法律来改变传播速度的态度 基因测试 许多基因测试在大学实验室进行， 很少的经济奖励。 人类基因组图谱已经 激发了商业兴趣。 商业支持的程度 在大学和工业界工作的科学家影响着 分享研究成果和对罕见疾病的兴趣将是 测定