Background: Previous studies have suggested that information offered by sellers of health-related direct-to-consumer genetic tests (DTC-GTs) is often incomplete, unbalanced, or too difficult to understand. The extent to which this is the case for sellers accessible to Dutch consumers has not previously been studied. Methods and Goals: The present study aimed to assess the completeness, balance, readability, and findability of informational content on a selection of websites from several health-related DTC-GT sellers accessible to Dutch consumers. An in-depth content analysis was performed based on a recently published checklist outlining key items for policy guidance regarding DTC-GT services. Results: The information provided by sellers did not equally cover all aspects relevant to health-related DTC-GT service provision. The provided information was slightly unbalanced, with benefits of health-related DTC-GT usage being overemphasized compared to its risks and limitations. The readability of the provided information was low, on average requiring college education for proper understanding. A findability analysis showed that information concerning all themes is overall relatively evenly distributed across analyzed sellers\' websites. Conclusions: Information provision by assessed health-related DTC-GT sellers is suboptimal regarding completeness, balance, and readability. To better empower potential consumers to make an informed decision regarding health-related DTC-GT usage, we advocate industry-wide enhancement of information provision.

The role of genetic counselors is evolving in response to health-related direct-to-consumer genetic tests (DTC-GT). While there is consensus in the literature that pre- and post-DTC-GT genetic counseling would benefit consumers, genetic counselors have reservations about DTC-GTs, and there is a paucity of research on providing DTC-GT counseling. This pilot quantitative survey is the first study to examine Canadian genetic counselors\' views on DTC-GTs and how this disruptive biotechnology affects their role, and consumer informed consent and privacy. Canadian genetic counselors are cognizant of the harm to informed consent and privacy associated with DTC-GT, but are hesitant to engage directly, wary of misusing clinical time and resources. However, counselors are open to producing educational materials on DTC-GTs and collaborating with other stakeholders and the DTC-GT industry to support consumers. In this study, practical considerations for DTC-GT counseling sessions are discussed, including the unique needs of DTC-GT patients and the challenges posed by DTC-GTs to the genetic counseling duty to inform. This research benefits genetic counselors and physicians by examining how best to utilize genetic counselors\' skills in the DTC-GT context, to minimize burdens on the healthcare system and support DTC-GT consumers.

Direct-to-consumer genetic test (DTC-GT) has been developing into an enormous market in China. Though no existing laws are directly applicable to DTC-GT, relevant laws and regulations are gradually being improved. In this study, we discuss how China\'s legislative and juridical practices in the field of DTC-GT have led to it being strictly constrained. The continuous improvement of relevant private and public laws is increasingly strengthening the informed consent and data protection issues that are involved with DTC-GT.

Professional societies, the FDA, and many direct-to-consumer genetic testing (DTC-GT) companies have highlighted the value of counseling from a medical professional with genetics expertise in order to enhance the value and minimize the risks associated with DTC-GT. However, there is limited information available identifying genetic counselors\' own views on DTC-GT, their willingness to counsel consumers based on DTC-GT results, and their experiences to date seeing DTC-GT consumers in a clinical setting. We surveyed genetic counselors accessed through mailing lists associated with the National Society of Genetic Counselors (NSGC) and the American Board of Genetic Counseling (ABGC). Response rate was estimated to be 12.2% (n = 482). A majority of all respondents (56.4%, n = 263) described themselves as feeling negatively or very negatively toward DTC-GT; only 6.9% (n = 32) described themselves as feeling positively or very positively. While 90.9% of respondents (n = 398) believed that DTC-GT would be improved with the involvement of genetic counselors, only 31.2% agreed or strongly agreed that they are comfortable providing counseling to DTC-GT consumers (n = 142). Clinical counseling of DTC-GT consumers is not routine but it is also not uncommon; 40.1% of all respondents (n = 189) have seen at least one consumer in clinic for the sole purpose of reviewing DTC-GT results. The results of our study suggest that most respondents would be more accepting of DTC-GT if genetic counseling was a part of the process, but the majority of counselors do not feel comfortable providing this service.