Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has (...) been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue. There are no data in this work. (shrink)

This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.

Millions of human biological samples are stored worldwide for medical research or treatment purposes. These biospecimens are of enormous potential value to law enforcement as DNA profiles can be obtained from these samples. However, forensic use of such biospecimens raises a number of ethical questions. This article aims to explore ethical issues of using human bodily material in medical biobanks for crime investigation and prosecution purposes. Concerns about confidentiality, trust, autonomy and justice will be discussed. We explore how to balance (...) these concerns against the importance of crime solving. Relevant case examples of forensic use of medical biobanks show that requests by law enforcement to access biobanks are handled in disparate ways. We identify some core ethical issues and conclude that further research on these issues is needed to provide ethical guidance. (shrink)

In the case of surrogacy, it is not new biotechnologies themselves that have challenged well-established principles in law and ethics, but rather political and social phenomena such as commodification of women’s reproductive tissue and labour, demands to allow new ways of forming families and (before Covid-19, at least) the comparative ease of international travel that enabled cross-border surrogacy to develop into a market valued at up to $2 billion annually in India alone as of 2016 (Dickenson 2016, citing an estimate (...) from The Indian National Commission for Women). This phenomenon stands the usual truth on its head: it is not new technologies but new pressures that have challenged the existing law and ethics of surrogate motherhood. (shrink)

This article offers a legal-ethical analysis of recent UK and Dutch proposals to regulate surrogacy proactively through a national system of pre-conception authorization of surrogacy agreements. Wi...

This edited volume covers new ground by bringing together perspectives from symbolic legislation theory on the one hand, and from biolaw and bioethics on the other hand. Symbolic legislation has a bad name. It usually refers to instances of legislation which are ineffective and that serve other political and social goals than the goals officially stated. Recently, a more positive notion of symbolic legislation has emerged in legislative theory. From this perspective, symbolic legislation is regarded as a positive alternative to (...) the more traditional, top-down legislative approach. The legislature no longer merely issues commands backed up with severe sanctions, as in instrumental legislation. Instead, lawmakers provide open and aspirational norms that are meant to change behavior not by means of threat, but indirectly, through debate and social interaction. Since the 1990s, biomedical developments have revived discussions on symbolic legislation. One of the reasons is that biomedical legislation touches on deep-rooted, symbolic-cultural representations of the biological aspects of human life. Moreover, as it is often impossible to reach consensus on these controversial questions, legislators have sought alternative ways to develop legal frameworks. Consequently, communicative and interactive approaches to legislation are prominent within the governance of medical biotechnology. The symbolic dimensions of biolaw are often overlooked. Yet, it is clear that the symbolic is at the heart of many legal-political debates on bioethical questions. Since the rise of biomedical technologies, human body materials have acquired a scientific, medical and even commercial value. These new approaches, which radically question existing legal symbolizations of the human body, raise the question whether and how the law should continue to reflect symbolic values and meanings. Moreover, how can we decide what these symbolic values are, given the fact that we live in a pluralistic society? (shrink)