Individual autonomy is a concept highly appreciated in modern Western societies. Its significance is reflected by the central importance and broad use of the model of informed consent in all fields of medicine. In predictive genetic testing, individual autonomy gains particular importance, for what is in focus here is not so much a concrete medical treatment but rather options for taking preventive measures and the influence that the test results have on long-term lifestyle and preferences. Based on an analysis of (...) autonomy-related issues in predictive genetic diagnosis and genetic screening programmes, this contribution stresses the central relevance of a broad notion of autonomy for the discussion of ethical issues raised in connection with predictive genetic testing and genetic screening programmes. Only against the background of such a broad notion of autonomy, which stresses not only free and informed decision-making but also the relevance of long-term prospects for leading a self-determined life in familial and social contexts, can the manifold autonomy-related issues linked to predictive genetic testing be given adequate consideration. (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)

The application of genetic technologies in China, especially in the area of prenatal genetic testing, is rapidly increasing in China. In the wealthy regions of China, prenatal genetic testing is already very widely adopted. We argue that the government should actively promote prenatal genetic testing to the poor areas of the country. In fact, the government should prioritize resources first to make prenatal genetic testing a standard routine care with an opt-out model in these area. Healthcare professions would be required (...) to inform pregnant women about the availability of genetic testing and provide free testing on a routine basis unless the parents choose not to do so. We argue that this proposal will allow parents to make a more informed decision about their reproductive choices. Secondarily, this proposal will attract more healthcare professionals and other healthcare resources to improve the healthcare infrastructures in the less-developed regions of the country. This will help to reduce the inequity of accessing healthcare services between in different regions of China. We further argue that this policy proposal is not practicing eugenics. (shrink)

This paper provides an empirical account of commercial genetic testing in China. Commercial predictive genetic testing has emerged and is developing rapidly in China, but there is no strict and effective governance. This raises a number of serious social and ethical issues as a consequence of the enormous potential market for such tests. The paper demonstrates that the commercialization of genetic testing and the lack of adequate regulation have created an environment in which dubious advertising practices and misleading and unprofessional (...) medical advice are commonplace. The consequences of these ethically problematic activities for the users of predictive tests are unknown. The paper concludes with a bioethical and social science perspective on the ethical governance issues raised by the dissemination and utilization of commercial genetic testing in Chinese society. (shrink)

This paper provides an empirical account of commercial genetic predisposition testing in mainland China, based on interviews with company mangers, regulators and clients, and literature research during fieldwork in mainland China from July to September 2006. This research demonstrates that the commercialization of genetic testing and the lack of adequate regulation have created an environment in which dubious advertising practices and misleading and unprofessional medical advice are commonplace. The consequences of these ethically problematic activities for the users of predictive tests (...) are, as yet, unknown. The paper concludes with a bioethical and social science perspective on the social and ethical issues raised by the dissemination and utilization of genetic testing in mainland China. (shrink)