In recent years, the principle of informed consent has come under significant pressure with the rise of biobanks and data infrastructures for medical research. Study-specific consent is unfeasible in the context of biobank and data infrastructure research; and while broad consent facilitates research, it has been criticised as being insufficient to secure a truly informed consent. Dynamic consent has been promoted as a promising alternative approach that could help patients and research participants regain control over the use of their biospecimen (...) and health data in medical research. Critical voices have focused mainly on concerns around its implementation; but little has been said about the argument that dynamic consent is morally superior to broad consent as a way to respect people’s individual autonomy. In this paper, we identify two versions of this argument—an information-focused version and a control-focused version—and then argue that both fail to establish the moral superiority of dynamic over broad consent. In particular, we argue that since autonomous choices are a certain species of choices, it is neither obvious that dynamic consent would meaningfully enhance people’s autonomy, nor that it is morally justifiable to act on every kind of consent choice enabled by dynamic consent. (shrink)

Ethical, legal and social implications (ELSIs) in forensic genetics investigations (FGIs) also involve conducting a careful assessment of the potential benefits and responsible use of genetic information. FGIs have become an invaluable tool in solving crimes and identifying individuals in various legal and investigative contexts. Moreover, forensic geneticists are called on to manage a series of controversial aspects during the daily practice of forensic investigation, including informed consent, cases of unintended genetic findings, the proband’s privacy, post-mortem sample collection, misinterpretation of (...) results, and the correct management of genetic databases. In this scenario, this article aims to discuss the main aspects of ELSIs regarding FGIs, providing an opportunity to delve into the complexities and nuances of ethical decision-making in the context of FGIs, considering that justice should be served while upholding the highest ethical standards. To date, ELSIs in FGIs involve respecting human dignity, safeguarding privacy, ensuring justice, promoting social solidarity, and carefully weighing up risks and benefits. By adhering to these principles, the forensic geneticist can advance criminal justice while upholding individual rights and privacy. In this way, the development of clear guidelines and protocols can help navigate this ethical dilemma and ensure that FGIs are conducted with integrity, transparency, and respect for individual autonomy. (shrink)

Genomic screening at population scale generates many ethical considerations. One is the normative role that people’s preferences should play in determining access to genomic information in screening contexts, particularly information that falls beyond the scope of screening. We expect both that people will express a preference to receive such results and that there will be interest from the professional community in providing them. In this paper, we consider this issue in relation to the just and equitable design of population screening (...) programs like reproductive genetic carrier screening (RGCS). Drawing on a pluralistic public health ethics perspective, we claim that generating and reporting information about genetic variants beyond the scope of the screening program usually lacks clinical, and perhaps personal, utility. There are both pragmatic and ethical reasons to restrict information provision to that which fits the stated purpose of the program. (shrink)

Genomic data is generated, processed and analysed at an increasingly rapid pace. This data is not limited to the medical context, but plays an important role in other contexts in society, such as commercial DNA testing, the forensic setting, archaeological research, and genetic surveillance. Genomic information also crosses the borders of these domains, e.g. forensic use of medical genetic information, insurance use of medical genomic information, or research use of commercial genomic data. This paper (1) argues that an informed consent (...) approach for genomic information has limitations in many societal contexts, and (2) seeks to broaden the bioethical debate on genomic information by suggesting an approach that is applicable across multiple societal contexts. I argue that the contextual integrity framework, a theory rooted in information technology and big data ethics, is an effective tool to explore ethical challenges that arise from genomic information within a variety of different contexts. Rather than focusing on individual control over information, the contextual integrity approach holds that information should be shared and protected according to the norms that govern certain distinct social contexts. Several advantages of this contextual integrity approach will be discussed. The paper concludes that the contextual integrity framework helps to articulate and address a broad spectrum of ethical, social, and political factors in a variety of different societal contexts, while giving consideration to the interests of individuals, groups, and society at large. (shrink)