Roel Feys

Millions of people have taken Direct-to-Consumer (DTC) DNA ancestry tests to learn more about their ethnic ancestry and family history. A small but growing body of research has noted that these DTC DNA ancestry tests raise challenging ethical, psychosocial, and resource-related issues that have not been adequately considered nor discussed. One key issue concerns a “Not Parent Expected” (NPE) discovery, in which a user suddenly and unexpectedly learns from these tests that an assumed parent (typically the father) is not a biological parent. Such news can negatively affect mental health, self-identity, and family relationships. Given the limited research on this topic, we aimed to explore experts’ views on the ethical, psychosocial and support-related aspects of DTC DNA ancestry testing, particularly for individuals who receive NPE news. We conducted a qualitative study. This involved semi-structured interviews with ten experts on DTC DNA ancestry testing, who had written about or actively researched these issues. The interviews were analysed using codebook thematic analysis. The analysis resulted in three overlapping themes. The first concerned insufficient support for the NPE population, despite the emergence of some relevant resources. The supports discussed included formal resources, such as genetic counselling and therapy, as well as informal resources, including online peer support. Both formal and informal resources were seen as having advantages and disadvantages. The second theme concerned the need for better consideration of informed consent before taking these tests. Many experts reported that standard consent procedures do not fully prepare consumers for the possibility of making an unexpected discovery such as an NPE event. They suggested that this information could be communicated more effectively, including using creative measures before consent is obtained. The third theme related to the testing companies’ role and responsibility in relation to support for individuals learning NPE news. A few experts suggested that these companies bear some moral responsibility, even in the absence of a legal obligation, to provide or direct individuals to supportive resources. Together, these findings contribute to ongoing debates regarding DTC DNA ancestry testing by highlighting the need for greater support for those affected by NPE discoveries and clearer consideration of the responsibilities of testing companies.

In the evolving field of advanced biopreservation technologies, the development of suspended animation (SA) is inspired by real-world challenges. In the context of space exploration, SA is seen as a solution to enable humans to undertake missions far beyond low Earth orbit, including routine travel to other planets in our solar system and beyond. While work on the socio-ethical and legal implications (ELSI) of space exploration continues to evolve, NASA has committed to make ethics a priority issue, making this a fruitful field for further examination.

Despite considerable scientific progress and the evolution of regulatory pathways to ensure safety and efficacy, US healthcare continues to see increasing health disparities. This suggests that clinical translation in of itself cannot be the only measure of its own success, especially when the most marginalized patients, are neglected in the development and implementation of medical innovations. This raises the question of whether a system that is narrowly focused on technical achievement can meet the moral obligations of medicine and public health. We argue that traditional technocratic standards are failing to integrate normative considerations into biomedical translation. What is needed is a translational domain that moves beyond safety and efficacy toward anticipating how proposed technologies will be effective in society as it exists. We propose an additional metric of success: translational justice.