...(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements. 2024 Tuberculosis Whole-genome sequencing Ethics Public health In recent years, increasingly detailed genomic...

... that protect the privacy and confidentiality of genomic data obtained through gNBS. We also appreciate the potential individual, familial, and societal benefits of long-term storage of genomic information. The ANA Code of Ethics defines privacy as “the right to control access to, and disclosure or non...

... an ethical analysis of such proposals for “precision rationing” and raise 4 key areas of concern. We argue that ethical issues arising in this area are not substantively different from the pressing ethical issues regarding rationing and discrimination more broadly, but provide important impetus...

... -scalability, public education, and ethical oversight are achieved, and technical/scientific progress continues. However, there will be considerable associated challenges for healthcare systems and society. Australia has made positive steps by developing a National Genomics Framework and launching disease...

...Angie Boyce; Alexis Walker; Priya Duggal; Chloe L. Thio; Gail Geller Background: Personal genetic information (PGI) about HIV is produced in research and entering the clinic and direct-to-consumer market, but little consideration has been given to ethical and social issues, public perspectives...

...Serena Oliveri; Gabriella Pravettoni; Chiara Fioretti; Mats G. Hansson Health-care systems as well as legislators and society seem largely unprepared to face and manage the massive production of genetic risk information. Ethics committees and professional bodies usually do not involve...

...Travis Hyams; Deborah J. Bowen; Celeste Condit; Jeremy Grossman; Megan Fitzmaurice; Deborah Goodman; Lari Wenzel; Karen L. Edwards Background: The practice of biorepository-based genetics research raises questions related to what ethical obligations researchers have to their participants...

... that would contribute to what is called personalised medicine. In this paper, we will highlight the ethical issues surrounding rationalisation and its impact on personalised medicine through the lens of the capability approach. Thereby, challenges to and opportunities for personalised medicine...

... a broader range of ethics-related data-sharing concerns. Methods: Ethics-related data-sharing concerns of Institutional Review Boards, ethics experts, international research consortia and research participants were identified through a literature search and systematically examined at a multidisciplinary...

... environment of the contributing study; participating studies have scientific, ethics, and data access approvals in place prior to the analysis; studies are clear that their consents conform with this use of data, and participants are informed that anonymisation for further disclosure will take place...

... to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements. Communication Ethics Governance Needs Networking Quality Rare diseases Registries Survey Sustainability A recent report [ 1 ] lists about 600 rare disease...

... Ethics Public health Social justice ‘Equity in health' has traditionally been a divisive issue within the field of public health. Even in the past few decades, there have been many revisions to how the concept has been operationalized [ 1 ]. Broadly speaking, ‘equity' is similar to fairness...

.... Scientists, ethicists, policy makers, and regulators must work closely together with research participants and communities in order to craft an equitable and just ethical framework, and a sustainable environment for effective policies. Such a framework should be a ‘hybrid' form which balances equity...

.... Communication Ethics False positive Newborn screening Stress Newborn screening programs for metabolic and endocrine disorders have recently expanded. Tennessee, like many states, routinely screens for over 40 conditions. This expansion of screening has lead to an increase in the number of affected...

... consultation Ethics Genetic research Group harm Human subjects Informed consent Stored tissue National Institutes of Health (NIH) 10.13039/100000002 In the absence of established regulatory mechanisms for assessing potential group benefits and harms resulting from genetic research...

...N. Arar; J. Seo; S. Lee; H.E. Abboud; L.A. Copeland; P. Noel; M. Parchman Objective: Communicating genetic research results to participants presents ethical challenges. Our objectives were to examine participants’ preferences in receiving future genetic research results and to compare preferences...

...E.M. Meslin With the domestic and international proliferation of biobanks and their associated connections to health information databases, scholarly attention has been turning from the ethical issues arising from the construction of biobanks to the ethical issues that emerge in their operation...

...K. Hens; H. Nys; J.-J. Cassiman; K. Dierickx Genetic research on pediatric stored tissue samples raises specific ethical questions that differ from those raised when adults are the donors. To investigate opinions on this matter, we conducted 10 focus group discussions. Five focus groups were...

..., quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements. Biobank Biorepository Data sharing Ethics Focus groups Genetic research...