Bruins Danny, Onstwedder Suzanne M, van Haelst Mieke M, Rigter Tessel
Amsterdam UMC, afd. Humane Genetica, Amsterdam.
Contact:
Ned Tijdschr Geneeskd. 2024 Aug 6;168:D8246.
Over the last 75 years, the field of Human Genetics has developed enormously. One of the recent developments involves health-related direct-to-consumer genetic tests (DTC-GTs), through which consumers gain insight in their genetic information and personal health risks without involvement of a health care professional. The DTC-GT market is diverse and dynamic, testing for continuously changing combinations of traits and DNA-variants that can affect personal health and disease. DTC-GTs can have positive and negative consequences for individuals, health care, society, and science. Notably, consumers are presently not optimally empowered for informed decision making regarding health-related DTC-GT usage. It is important to protect them from negative impact, given the present lack of actionable legislation. Insight in which citizens buy these tests, and why they do so, will help to properly inform and empower consumers to make informed decisions both before and after purchasing health-related DTC-GTs. Projects answering these questions are ongoing.
在过去的75年里，人类遗传学领域取得了巨大的发展。最近的一项发展涉及与健康相关的直接面向消费者的基因检测（DTC-GTs），通过这种检测，消费者无需医疗保健专业人员的参与就能了解自己的基因信息和个人健康风险。DTC-GT市场多样且动态，检测不断变化的可能影响个人健康和疾病的性状和DNA变异组合。DTC-GTs对个人、医疗保健、社会和科学可能产生积极和消极的影响。值得注意的是，目前消费者在就与健康相关的DTC-GT使用做出明智决策方面并未得到充分的授权。鉴于目前缺乏可实施的立法，保护他们免受负面影响非常重要。了解公民购买这些检测的情况以及原因，将有助于恰当地为消费者提供信息并赋予他们权力，以便在购买与健康相关的DTC-GTs之前和之后做出明智的决策。回答这些问题的项目正在进行中。
