4YouandMe, Seattle, WA, United States.
Department of Psychiatry, University of Oxford, Oxford, United Kingdom.
J Med Internet Res. 2022 Oct 20;24(10):e41417. doi: 10.2196/41417.
The recent Supreme Court decision (ie, Dobbs v. Jackson Women's Health Organization), revoking the constitutional right to abortion in the United States, has the potential to dramatically disrupt progress in women's health research. The typical safeguards to ensure confidentiality and privacy of research participants in studies that collect certain types of personal health information may not hold against criminal investigations surrounding suspected pregnancy terminations. There are additional risks to participants in digital health research studies involving the use of wearable devices capable of tracking physiological measures, such as body temperature and heart rate, as these have shown promise for tracking conception and could be used to identify pregnancy termination signatures. There are strategies researchers can use to protect the safety of participants in health research who could get pregnant, while also maintaining integrity of research methods. The objective of this viewpoint is to discuss potential strategies to protect research participants' privacy that include the minimization of nonessential sensitive personal health information and anonymization protocols in the event of miscarriage or termination of pregnancy. We invite others to join this discussion so as to not let the current political landscape impede progress in women's health and reproductive research, while also protecting research participants.
最近美国最高法院的一项裁决(即多布斯诉杰克逊妇女健康组织案)推翻了美国宪法规定的堕胎权,这有可能严重阻碍妇女健康研究的进展。在收集某些类型个人健康信息的研究中,确保研究参与者的保密性和隐私性的典型保障措施可能无法阻止围绕疑似终止妊娠的刑事调查。在涉及使用可跟踪生理指标(如体温和心率)的可穿戴设备的数字健康研究中,参与者还面临额外的风险,因为这些设备在跟踪受孕方面显示出了前景,并可能用于识别终止妊娠的特征。研究人员可以使用一些策略来保护可能怀孕的参与健康研究的参与者的安全,同时维护研究方法的完整性。本观点的目的是讨论保护研究参与者隐私的潜在策略,包括在发生流产或终止妊娠的情况下,尽量减少非必要的敏感个人健康信息,并采用匿名化协议。我们邀请其他人加入这一讨论,以免当前的政治格局阻碍妇女健康和生殖研究的进展,同时保护研究参与者。