Modell B
Department of Obstetrics and Gynaecology, University College London, UK.
Ann Med. 1992 Dec;24(6):549-55. doi: 10.3109/07853899209167009.
Public and professional concern associated with the idea of genetic screening has generated numerous publications on the ethics of genetic screening (e.g. 1-4). Concerns revolve around inadequate consultation before screening is carried out, the unearthing of worrying risks, the use of genetic information in ways that could be disadvantageous to the person involved, stigma, and a phenomenon known as the 'technological imperative', which means that simply because a technology is available there is a tendency to use it. Most reports agree that, in practice, the main ethical problems are likely to involve screening for risk of common diseases of adult life, because of the possible impact on a person's healthy self-image, implications for health and life insurance, and the possibility of commercial exploitation of people who know themselves to be vulnerable. In this paper I do not propose to address these issues directly. I have been invited to discuss this subject as a clinician involved with genetic screening, counselling and prenatal diagnosis for the haemoglobin disorders, the most common serious human recessively inherited diseases. Since we are scientists, any recommendations we make should be based on experience: my aim is to show that experience is often surprising, and that it is often possible to meet public concerns by taking quite simple practical steps.
与基因筛查概念相关的公众和专业关注催生了大量关于基因筛查伦理的出版物（例如1 - 4）。关注点围绕着在进行筛查之前咨询不足、发现令人担忧的风险、以可能对相关人员不利的方式使用基因信息、污名化以及一种被称为“技术强制”的现象，即仅仅因为有一项技术可用就存在使用它的倾向。大多数报告一致认为，在实际操作中，主要的伦理问题可能涉及对成年期常见疾病风险的筛查，这是因为它可能会对一个人的健康自我认知产生影响，涉及健康和人寿保险方面，以及存在对自知易受影响的人群进行商业剥削的可能性。在本文中，我不打算直接探讨这些问题。我受邀作为一名从事血红蛋白疾病（最常见且严重的人类隐性遗传疾病）基因筛查、咨询和产前诊断的临床医生来讨论这个话题。由于我们是科学家，我们提出的任何建议都应该基于经验：我的目的是表明经验往往令人惊讶，而且通常通过采取相当简单的实际步骤就有可能回应公众的关切。
