Section Community Genetics, Department of Clinical Genetics, EMGO Institute for Health and Care Research, VU University Medical Center Amsterdam, Amsterdam, The Netherlands.
Eur J Hum Genet. 2013 Aug;21(8):793-9. doi: 10.1038/ejhg.2012.271. Epub 2012 Dec 19.
Ten years after the Human Genome Project, medicine is still waiting for many of the promised benefits, and experts have tempered their high expectations. Public opinion on genetic testing has generally been favourable but is this still the case? The aim of this study is to compare public experiences, beliefs and expectations concerning genetic testing over the years (2002 vs 2010). A cross-sectional questionnaire survey was conducted using the Dutch Health Care Consumer Panel in 2002 and 2010. Responses to questions in identical wording were compared. In 2002 and 2010, 817 (63%) and 978 (70%) members responded, respectively. Awareness and reported use of genetic tests remained stable over time. In 2010, more respondents expected genetic testing to become more widely applied, believed that knowledge about the genetic background of disease helps people live longer, and that testing should be promoted more intensively. In 2010, they were also more interested in their own genetic make-up. On the one hand, the concern that a dichotomy would emerge between people with 'good genes' and 'bad genes' was higher. On the other hand, respondents thought that insurance companies would be less likely to demand a genetic test in order to calculate health insurance premiums. In conclusion, the results suggest that in 8 years, expectations of benefits and potential use of genetic testing have been raised among the public, resulting in more positive opinions. Worries on inequity remain, although worries about premium differentiation by insurance companies have decreased.
人类基因组计划实施 10 年后,医学仍然在等待许多承诺的好处,专家们也降低了他们的高期望。公众对基因检测的看法总体上是积极的,但情况仍然如此吗?本研究旨在比较多年来(2002 年与 2010 年)公众对基因检测的经验、信念和期望。2002 年和 2010 年,使用荷兰医疗保健消费者小组进行了横断面问卷调查。比较了相同措辞问题的回答。2002 年和 2010 年,分别有 817 名(63%)和 978 名(70%)成员做出了回应。基因检测的知晓率和报告使用率多年来保持稳定。2010 年,更多的受访者预计基因检测将得到更广泛的应用,认为了解疾病的遗传背景有助于人们长寿,应该更积极地推广检测。2010 年,他们对自己的基因构成也更感兴趣。一方面,人们更担心会出现“好基因”和“坏基因”人群之间的二分法。另一方面,受访者认为保险公司不太可能要求进行基因检测来计算健康保险费。总之,结果表明,在 8 年内,公众对基因检测的益处和潜在用途的期望有所提高,这导致了更积极的观点。对不公平的担忧仍然存在,尽管保险公司对保费差异化的担忧有所减少。