Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance
AbstractBiobanks act as the custodians for the access to and responsible use of human biological samples and related data that have been generously donated by individuals to serve the public interest and scientific advances in the health research realm. Risk assessment has become a daily practice for biobanks and has been discussed from different perspect ives. This paper aims to provide a literature review on risk assessment in order to put together a comprehensive typology of diverse risks biobanks could potentially face. Methodologically set as a typology, the conceptual approach used in this paper is based on the i...
Source: Life Sciences, Society and Policy - December 13, 2021 Category: Medical Ethics Source Type: research
Data is the new oil: citizen science and informed consent in an era of researchers handling of an economically valuable resource
AbstractAs with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerat...
Source: Life Sciences, Society and Policy - December 10, 2021 Category: Medical Ethics Source Type: research
“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource
AbstractAs with other areas of the social world, academic research in the contemporary healthcare setting has undergone adaptation and change. For example, research methods are increasingly incorporating citizen participation in the research process, and there has been an increase in collaborative research that brings academic and industry partners together. There have been numerous positive outcomes associated with both of these growing methodological and collaborative processes; nonetheless, both bring with them ethical considerations that require careful thought and attention. This paper addresses the ethical considerat...
Source: Life Sciences, Society and Policy - December 10, 2021 Category: Medical Ethics Source Type: research
Investigating the effectiveness of nanotechnologies in environmental health with an emphasis on environmental health journals
In this study, 774 articles related to 114 issues of 3 specialized environmental health journals were reviewed. A review of 774 articles showed that 80 articles (10.3%) were published in the field of nanotechnologies. Out of 80 articles published in the field of nanotechnology, 66 articles (82.5%) were published on the subject of water, 9 articles (11.3%) on wastewater and 5 articles (6.2%) on air pollution. Subject review of articles showed that articles using carbon nanotubes to remove natural organic pollutants, surfactants, hydroxybenzenes, phenol, dimethyl phthalates, use of titanium dioxide nanoparticles, iron-magnes...
Source: Life Sciences, Society and Policy - September 13, 2021 Category: Medical Ethics Source Type: research
Limits of data anonymity: lack of public awareness risks trust in health system activities
AbstractPublic trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to trust these activities with their personal data. An analysis of online news r...
Source: Life Sciences, Society and Policy - July 26, 2021 Category: Medical Ethics Source Type: research
The use of digital twins in healthcare: socio-ethical benefits and socio-ethical risks
In this report we present the results of a qualitative study into the socio-ethical benefits and socio-ethical risks of using digital twins in healthcare. Employing insights from ethics of technology and the Quadruple Helix theory of innovation, we conducted desk research of white literature and 23 interviews with representatives from the four helixes: industry, research, policy and civil society. The ethical scan revealed several important areas where the digital twin can produce socio-ethical value (e.g., prevention and treatment of disease, cost reduction, patient autonomy and freedom, equal treatment) but also several ...
Source: Life Sciences, Society and Policy - July 5, 2021 Category: Medical Ethics Source Type: research
Willingness of youth without disabilities to have romantic love and marital relationships with persons with disabilities
The objective of the present research was to assess the willingness of non-disabled youth to engage in conjugal relationships with persons with disabilities in Wolaita Sodo town, Ethiopia. Both descriptive and explanatory study designs were used and quantitative data were collected. A self-administered questionnaire was designed and distributed to randomly selected 403 (202 females& 201 males) unmarried youth. Data analysis was undertaken using SPSS software in which both descriptive and inferential statistical techniques were utilized for data presentation. The result showed that most (85.5%) of the young people witho...
Source: Life Sciences, Society and Policy - June 21, 2021 Category: Medical Ethics Source Type: research
Research under the GDPR a level playing field for public and private sector research?
This article looks at the role the EU s General Data Regulation plays in determining which types of actors can conduct research with personal data. In doing so it focuses on the various legal bases that are available and attempts to discern whether the GDPR can be said to favour research in either the public or private domains. As th is article explains, the picture is nuanced, with either type of research actor enjoying advantages and disadvantages in specific contexts. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - March 1, 2021 Category: Medical Ethics Source Type: research
Research under the GDPR – a level playing field for public and private sector research?
This article looks at the role the EU ’s General Data Regulation plays in determining which types of actors can conduct research with personal data. In doing so it focuses on the various legal bases that are available and attempts to discern whether the GDPR can be said to favour research in either the public or private domains. As th is article explains, the picture is nuanced, with either type of research actor enjoying advantages and disadvantages in specific contexts. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - March 1, 2021 Category: Medical Ethics Source Type: research
Identifying violence against the LGTBI+ community in Catalan universities
This study highlights a previously unreported problem and identifies future research avenues in un iversity contexts. (Source: Life Sciences, Society and Policy)
Source: Life Sciences, Society and Policy - February 22, 2021 Category: Medical Ethics Source Type: research
A secure procedure for early career scientists to report apparent misconduct
AbstractEarly career scientists sometimes observe senior scientists engage in apparent scientific misconduct, but feel powerless to intervene, lest they imperil their careers. We propose a Secure Reporting Procedure that both protects them, when pursuing those concerns, and treats the senior scientists fairly. The proposed procedure is, we argue, consistent with the ethical principles of the scientific community, as expressed in the codes of its professional organizations. However, its implementation will require changes in procedures and regulations. Those efforts will be a small price to pay for protecting the scientific...
Source: Life Sciences, Society and Policy - January 25, 2021 Category: Medical Ethics Source Type: research
The funhouse mirror: the I in personalised healthcare
AbstractPrecision Medicine is driven by the idea that the rapidly increasing range of relatively cheap and efficient self-tracking devices make it feasible to collect multiple kinds of phenotypic data. Advocates ofN = 1 research emphasize the countless opportunities personal data provide for optimizing individual health. At the same time, using biomarker data for lifestyle interventions has shown to entail complex challenges. In this paper, we argue that researchers in the field of precision medicine need to address the performative dimension of collecting data. We propose the fun-house mirror as a metaphor for the use...
Source: Life Sciences, Society and Policy - January 5, 2021 Category: Medical Ethics Source Type: research
Governance of research consortia: challenges of implementing Responsible Research and Innovation within Europe
AbstractResponsible Research and Innovation ( ‘RRI’) is a cross-cutting priority for scientific research in the European Union and beyond. This paper considers whether the way such research is organised and delivered lends itself to the aims of RRI. We focus particularly on international consortia, which have emerged as a common model to or ganise large-scale, multi-disciplinary research in contemporary biomedical science. Typically, these consortia operate through fixed-term contracts, and employ governance frameworks consisting of reasonably standard, modular components such as management committees, advisory boards,...
Source: Life Sciences, Society and Policy - November 16, 2020 Category: Medical Ethics Source Type: research
THE FUTURE OF MEDICINE, healthcare innovation through precision medicine: policy case study of Qatar
AbstractIn 2016, the World Innovation Summit for Health (WISH) published its Forum Report on precision medicine “PRECISION MEDICINE - A GLOBAL ACTION PLAN FOR IMPACT”. Healthcare is undergoing a transformation, and it is imperative to leverage new technologies to generate new data and support the advent of precision medicine (PM). Recent scientific breakthroughs and technological advancements have improved our disease knowledge and altered diagnosis and treat ment approaches resulting in a more precise, predictive, preventative and personalized health care that is customized for the individual patient. Consequently, th...
Source: Life Sciences, Society and Policy - November 1, 2020 Category: Medical Ethics Source Type: research
Good problems to have? Policy and societal implications of a disease-modifying therapy for presymptomatic late-onset Alzheimer ’s disease
AbstractIn the United States alone, the prevalence of AD is expected to more than double from six million people in 2019 to nearly 14 million people in 2050. Meanwhile, the track record for developing treatments for AD has been marked by decades of failure. But recent progress in genetics, neuroscience and gene editing suggest that effective treatments could be on the horizon. The arrival of such treatments would have profound implications for the way we diagnose, triage, study, and allocate resources to Alzheimer ’s patients. Because the disease is not rare and because it strikes late in life, the development of therapi...
Source: Life Sciences, Society and Policy - October 12, 2020 Category: Medical Ethics Source Type: research
