Biobanking and risk assessment: a comprehensive typology of risks for an adaptive risk governance

Biobanks 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 perspectives. 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 interdisciplinary analysis of scientific literature, the relevant ethical and legal instruments and practices in biobanking to identify how risks are assessed, considered and mitigated. Through an interdisciplinary mapping exercise, we have produced a typology of potential risks in biobanking, taking into consideration the perspectives of different stakeholders, such as institutional actors and publics, including participants and representative organizations. With this approach, we have identified the following risk types: economic, infrastructural, institutional, research community risks and participant’s risks. The paper concludes by highlighting the necessity of an adaptive risk governance as an integral part of good governance in biobanking. In this regard, it contributes to sustainability in biobanking by assisting in the design of relevant risk management practices, where they are not already in place or require an update. The typology is intended to be useful from the early stages of establishing such a complex and multileveled biomedical infrastructure as well as to provide a catalogue of risks for improving the risk management practices already in place.

“Data is the new oil”: citizen science and informed consent in an era of researchers handling of an economically valuable resource

As 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 considerations that research teams must consider when using participatory methods and/or when working with industry and outlines a novel informed consent matrix designed to maintain the high ethical standard to which academic research in the healthcare arena has traditionally adhered.

Investigating the effectiveness of nanotechnologies in environmental health with an emphasis on environmental health journals

Objective The use of nanotechnologies is important to reduce environmental health problems in Iran, so the present study was conducted to determine the effectiveness of nanotechnologies in environmental health. This is a cross-sectional descriptive study for 11-year periods (2008–2018) on all articles published in three specialized journals of environmental health with emphasis on the use of nanotechnologies in various fields of environmental health (water, air, sewage, waste, food, radiation, etc). Results 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-magnesium nanoparticles for wastewater treatment, Silver nanoparticles were used to remove air pollution. The results showed that published articles on nanotechnology in the field of environmental health were few.

Limits of data anonymity: lack of public awareness risks trust in health system activities

Public 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 readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data.

The use of digital twins in healthcare: socio-ethical benefits and socio-ethical risks

Anticipating the ethical impact of emerging technologies is an essential part of responsible innovation. One such emergent technology is the digital twin which we define here as a living replica of a physical system (human or non-human). A digital twin combines various emerging technologies such as AI, Internet of Things, big data and robotics, each component bringing its own socio-ethical issues to the resulting artefacts. The question thus arises which of these socio-ethical themes surface in the process and how they are perceived by stakeholders in the field. 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 important areas of socio-ethical risks (e.g., privacy and property of data, disruption of existing societal structures, inequality and injustice). We conclude with a reflection on the employed analytical tool and suggestions for further research.

Willingness of youth without disabilities to have romantic love and marital relationships with persons with disabilities

People with disabilities face attitudinal barriers including prejudice, stereotypes, and low expectations. Many young people without disabilities may doubt that people with disabilities can be fulfilling partners in any loving adult relationship. 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 without disabilities participated in the survey were not willing to have any type of personal relationships with persons with disabilities and the main reason for 44.2% of these respondents being the fear of reaction from family members. Furthermore, it was found that the level of willingness of youth without disabilities to engage in romantic love and marital relationships was not influenced by the socio-economic status of people with disabilities. Moreover, the result of binary logistic regression analysis showed that the willingness of respondents to have marital and romantic love relationship with persons with disabilities is significantly associated to the sex (OR = 2.376; P < 0.05; 95%CI = 1.210, 4.664), raised-up area (OR = 2.512; P < 0.01; 95%CI = 1.319, 4.783), age (OR = 2.886; P < 0.05; 95%CI = 1.012, 8.228) and the presence of person with disability in the family (OR = 3.945; P < 0.01; 95%CI = 1.648, 9.442) of respondents. The findings of the present research demonstrate that people with disabilities have continued to face stereotypes and discriminations. Such stereotypes extend to assuming them as asexual and unfit to carryout roles that arise from love or marital relationships which violates the rights of PWDs to form their own family and have children. It is therefore, important to raise the awareness of young people about the differences between disability and sexuality and that physical disability has nothing to do with sexuality and relationship formation.

Research under the GDPR – a level playing field for public and private sector research?

Scientific research is indispensable inter alia in order to treat harmful diseases, address societal challenges and foster economic innovation. Such research is not the domain of a single type of organization but can be conducted by a range of different entities in both the public and private sectors. Given that the use of personal data may be indispensable for many forms of research, the data protection framework will play an important role in determining not only what types of research may occur but also which types of actors may carry it out. 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 this article explains, the picture is nuanced, with either type of research actor enjoying advantages and disadvantages in specific contexts.

Identifying violence against the LGTBI+ community in Catalan universities

Social struggles have led to the legal recognition of the rights of LGTBI+ people in some countries. Even so, violence against LGTBI+ people is a social problem throughout the world, and has resulted in the vulnerability and victimization of the members of this group. In Spain, no research has been published to date that analyzes this problem in the university context. Considering the scarcity of studies on the identification of this type of violence in Spain, the main objective of this study was to identify violence against LGBTI+ people in Catalan universities. We administered a battery of questions to a sample of 571 university students from six universities in Catalonia (77.8% women) between 17 and 55 years old (M = 21.0; SD = 3.96). Of the 12 situations of violence presented, psychological violence was identified as the most common type. Within our sample, 61.0% reported either being aware of or having experienced some type of violence related to the university context and motivated by the sexual orientation, gender identity, or gender expression of the victim. The results also show that these types of violence in the university context are rarely reported, especially when they do not include physical violence. This study highlights a previously unreported problem and identifies future research avenues in university contexts.

A secure procedure for early career scientists to report apparent misconduct

Early 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 community’s integrity and fidelity to its principles. We begin by describing the circumstances motivating the proposal, then sketch its design, and, finally, illustrate next steps in its application in two national settings.

The funhouse mirror: the I in personalised healthcare

Precision 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 of N = 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 of personal health data; each health data source yields a particular type of image that can be regarded as a ‘data mirror’ that is by definition specific and skewed. This requires competence on the part of individuals to adequately interpret the images thus provided.