Views of Privacy of Genetic Information

对遗传信息隐私的看法

基本信息

批准号：
6419830
负责人：
ROBERT L KLITZMAN
金额：
$ 43.94万
依托单位：
NEW YORK STATE PSYCHIATRIC INSTITUTE DBA RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC
依托单位国家：
美国
项目类别：
财政年份：
2002
资助国家：
美国
起止时间：
2002-02-08 至 2006-01-31
项目状态：
已结题

项目摘要

The increasing availability of genetic information on individuals raises a series of critical questions concerning privacy and confidentiality that have not been fully explored. The rise of computers, the Internet, and managed care all threaten the privacy of individuals' health information; and the sequencing of the human genome makes these issues particularly acute. Sharing genetic information may lead to stigma, discrimination, and threats to jobs and life and health insurance. Former President Clinton released privacy regulations, and some states have genetic privacy laws, yet numerous questions and controversies remain. The implementation of such safeguards remains unclear, and patient advocates feel further policies are needed. It is also unclear how privacy concerns and such regulations may affect behavior (e.g., participation in genetic testing) and to what degree new safeguards will allay patient concerns. It is critical to understand patients' underlying conceptions, views and approaches to privacy, and to policy and threats to privacy, and factors involved in these views. Yet no published research has investigated in-depth the perspectives and experiences of individuals confronting genetic diseases, concerning these issues. The aims of this study are thus 1) to explore views of privacy issues among individuals who are at risk of or have genetic disorders concerning privacy of genetic and other health information, threats to privacy, possible policies, and tradeoffs between privacy and benefits that might accrue from sharing genetic information (e.g., for research); 2) to explore the experiences of these individuals concerning privacy and disclosure - to whom they have disclosed that they confront a genetic disease (e.g., to health care professionals, family members, co-workers, employers, and insurance companies); when, why and what they disclosed; what reactions (e.g., stigma and discrimination) they have encountered; and how they view and make these privacy and disclosure decisions; 3) to explore the relationship of these views of privacy to health behaviors (e.g., delaying or avoiding diagnostic tests or treatment); and 4) to assess how type of genetic or other illness, or other factors may affect these views and experiences. We will conduct in-depth semi-structured interviews with 160 individuals -40 each who confront Huntington's Disease, genetically-linked breast cancer, alpha 1 antitrypsin deficiency, and, as a comparison group, coronary artery disease. We have chosen the first 3 of these disorders because our pilot work suggests that critical privacy concerns arise with all 3 of these genetic diseases, but are related to different aspects of these conditions. The findings of this study can enhance further policy, professional and public education, and future research in this area.

个人遗传信息的可用性不断增加，引发了一系列有关隐私和保密性的关键问题，但这些问题尚未得到充分探讨。计算机、互联网和管理式医疗的兴起都威胁着个人健康信息的隐私；人类基因组测序使这些问题变得尤为尖锐。分享遗传信息可能会导致耻辱、歧视以及对工作、人寿和健康保险的威胁。前总统克林顿发布了隐私法规，一些州制定了基因隐私法，但仍然存在许多问题和争议。此类保障措施的实施情况仍不清楚，患者权益倡导者认为需要进一步的政策。目前还不清楚隐私问题和此类法规如何影响行为（例如参与基因检测）以及新的保障措施将在多大程度上减轻患者的担忧。了解患者对隐私的基本概念、观点和方法，以及对隐私的政策和威胁以及这些观点所涉及的因素至关重要。然而，还没有已发表的研究深入调查面临遗传疾病的个人对这些问题的看法和经历。因此，本研究的目的是 1) 探讨有遗传性疾病风险或患有遗传性疾病的个人对隐私问题的看法，涉及遗传和其他健康信息的隐私、对隐私的威胁、可能的政策以及隐私和可能带来的利益之间的权衡。通过共享遗传信息（例如用于研究）而获得； 2) 探索这些人在隐私和披露方面的经历——他们向谁透露自己患有遗传疾病（例如，向医疗保健专业人员、家庭成员、同事、雇主和保险公司）；他们何时、为何以及披露了什么内容；他们遇到了什么反应（例如，耻辱和歧视）；以及他们如何看待和做出这些隐私和披露决定； 3）探索这些隐私观点与健康行为的关系（例如，延迟或避免诊断测试或治疗）； 4) 评估遗传或其他疾病的类型或其他因素如何影响这些观点和经历。我们将对 160 名 -40 名个体进行深入的半结构化访谈，他们患有亨廷顿病、遗传性乳腺癌、α1 抗胰蛋白酶缺乏症，以及作为对照组的冠状动脉疾病。我们选择了前 3 种疾病，因为我们的试点工作表明，所有这 3 种遗传疾病都会引起严重的隐私问题，但与这些疾病的不同方面相关。这项研究的结果可以加强进一步的政策、专业和公共教育以及该领域的未来研究。