Surrogacy relationships: a critical interpretative review

Based on a critical interpretative review of existing qualitative research investigating accounts of ‘lived experience’ of surrogates and intended parents from a relational perspective, this article proposes a typology of surrogacy arrangements. The review is based on the analysis of 39 articles, which belong to a range of different disciplines (mostly sociology, social psychology, anthropology, ethnology, and gender studies). The number of interviews in each study range from as few as seven to over one hundred. Countries covered include Australia, Canada, Greece, India, Iran, Israel, Italy, Mexico, Norway, Russia, Sweden, UK, Ukraine, and the USA. Most studies focus only on surrogacy practices in one country (although often with intended parents from other countries), and some include several countries (e.g. interviewees from several countries or fieldwork in different field-sites). The proposed typology goes beyond the division between altruistic versus commercial, and traditional versus gestational surrogacy, in order to inform further research and to contribute to bioethical and policy debates on surrogacy in a transnational context. Four types of relations are identifiable: open, restricted, structured, and enmeshed. The criteria which influence these relationships are: the frequency and character of contact pre- and post-birth; expectations of both parties; the type of exchange involved in surrogacy arrangements; and cultural, legal, and economic contexts. The theoretical contribution of the article is to further the development of a relational justice approach to surrogacy

Risk Communication in Assisted Reproduction in Latvia: From Private Experience to Ethical Issues

The aim of this paper is to analyze the process of risk communication in the context of assisted reproduction in Latvia. The paper is based on a qualitative methodology and two types of data: media analysis and 30 semi-structured interviews (11 patients, 4 egg donors, 15 experts). The study explores a broad definition of risk communication and explores three types of risks: health, psychosocial, and moral. We ask (1), who is involved in risk communication, (2), how risks are discussed using different channels of communication, and (3), what ethical problems arise during this process. In the process of analysis, we identified four types of information channels and two strategies of risk communication used by patients, as well as several ethical problems. In our view, the analysis of risk communication practices is significant to improve patient/physician relationship, as well as better meet patients' needs for comprehensive risk information

Becoming and being a biobank donor: The role of relationships and ethics

Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative analysis of 40 qualitative semi-structured interviews with biobank donors and researchers. The results show that relatedness to relatives or other types of close relationships played a significant role in the donors’ motivation to be involved in a biobank, risk-benefit assessment, and decisions on sharing information on research and its results. Interviewees mentioned ethical issues in the context of sharing relatives’ health-related data for research purposes and returning research findings that may affect their relatives. We conclude that the question of what information on family members may be shared with a biobank by research participants without informed consent of those relatives, and when family members become research subjects, lacks a clear answer and detailed guidelines, especially in the context of the introduction of the European Union’s (EU) General Data Protection Regulation. Researchers in Latvia and EU face ethical questions and dilemmas about returning research results and incidental findings to donors’ relatives, and donors need more information on sharing research results with relatives in the informed consent process

Ethical and social reflections on the proposed European Health Data Space

The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the General Data Protection Regulation (GDPR). The introduction of the draft regulation for a European Health Data Space (EHDS) in May 2022 seeks to address some of these legal issues. If passed, it will create an obligation to share electronic health data for certain secondary purposes. While there is a clear need to address the legal complexities involved with data sharing, it is critical that any proposed reforms are in line with ethical principles and the expectations of the data subjects. In this paper we offer a critique of the EHDS and offer some recommendations for this evolving regulatory space

Ethical issues in genomics research on neurodevelopmental disorders: a critical interpretive review

Background Genomic research on neurodevelopmental disorders (NDDs), particularly involving minors, combines and amplifies existing research ethics issues for biomedical research. We performed a review of the literature on the ethical issues associated with genomic research involving children affected by NDDs as an aid to researchers to better anticipate and address ethical concerns. Results Qualitative thematic analysis of the included articles revealed themes in three main areas: research design and ethics review, inclusion of research participants, and communication of research results. Ethical issues known to be associated with genomic research in general, such as privacy risks and informed consent/assent, seem especially pressing for NDD participants because of their potentially decreased cognitive abilities, increased vulnerability, and stigma associated with mental health problems. Additionally, there are informational risks: learning genetic information about NDD may have psychological and social impact, not only for the research participant but also for family members. However, there are potential benefits associated with research participation, too: by enrolling in research, the participants may access genetic testing and thus increase their chances of receiving a (genetic) diagnosis for their neurodevelopmental symptoms, prognostic or predictive information about disease progression or the risk of concurrent future disorders. Based on the results of our review, we developed an ethics checklist for genomic research involving children affected by NDDs. Conclusions In setting up and designing genomic research efforts in NDD, researchers should partner with communities of persons with NDDs. Particular attention should be paid to preventing disproportional burdens of research participation of children with NDDs and their siblings, parents and other family members. Researchers should carefully tailor the information and informed consent procedures to avoid therapeutic and diagnostic misconception in NDD research. To better anticipate and address ethical issues in specific NDD studies, we suggest researchers to use the ethics checklist for genomic research involving children affected by NDDs presented in this paper

Sunshine Policies and Murky Shadows in Europe: Disclosure of Pharmaceutical Industry Payments to Health Professionals in Nine European Countries

Abstract Relationships between health professionals and pharmaceutical manufacturers can unduly influence clinical practice. These relationships are the focus of global transparency efforts, including in Europe. We conducted a descriptive content analysis of the transparency provisions implemented by February 2017 in nine European Union (EU) countries concerning payments to health professionals, with duplicate independent coding of all data. Using an author-generated, semi-structured questionnaire, we collected information from each disclosure policy/code on: target industries, categories of healthcare professionals covered, scope of payments included, location and searchability of the disclosed data. Our analysis shows that although important improvements have been put in place in the past few years, significant gaps remain in disclosure requirements and their implementation. The situation differs substantially from country to country and the most striking differences are between governmental and self-regulatory approaches, especially with regard to the comprehensiveness of the disclosed data. In many cases, individuals can still opt out and reporting is incomplete, with common influential gifts such as food and drink excluded. Finally, in several countries data are only available as separate PDFs from companies, thus making the payment reports difficult to access and analyse. In order to overcome these gaps, minimum standards for disclosures should be implemented across Europe. All payments to healthcare professionals and organizations should be included, all health-related industries should be required to submit reports, and usability of disclosed data should be guaranteed

Disease awareness campaigns in printed and online media in Latvia : Cross-sectional study on consistency with WHO ethical criteria for medicinal drug promotion and European standards

Funding Information: Teresa Leonardo Alves declares no conflicts of interest. She has worked in the past for not-for-profit organizations which have advocated against the relaxation of the direct-to-consumer advertising ban in the European Union, namely Prescrire (2012–2016) and Health Action International (2006–2011). Elita Poplavska is a board member of not-for-profit organizations - Health Projects for Latvia and Health Action International (which aim to promote rational use of medicines and reduce influence of pharmaceutical advertisement). Signe Mezinska is a board member of not-for-profit organizations - Health Projects for Latvia and Health Action International (which aim to promote rational use of medicines and reduce influence of pharmaceutical advertisement). Ieva Salmane-Kulikovska declares no conflicts of interest. Liga Andersone declares no conflicts of interest. Aukje Mantel-Teeuwisse is the Managing Director of the WHO Collaborating Centre for Pharmaceutical Policy & Regulation, which receives no direct funding or donations from private parties, including the pharmaceutical industry. Research funding from public-private partnerships, e.g. IMI, Lygature (https://www.lygature.org), is accepted under the condition that no company-specific product or company-related study is conducted. The Centre has received unrestricted research funding from public sources, e.g. Netherlands Organisation for Health Research and Development (ZonMW), Zorg Instituut Nederland (ZIN), the Dutch Medicines Evaluation Board (MEB), and the Dutch Ministry of Health. Barbara Mintzes has acted as an expert witness on behalf of plaintiffs in a Canadian class action suit on cardiovascular risks of testosterone therapy. Publisher Copyright: © 2018 The Author(s).Background: European legislation prohibits direct-to-consumer advertising of prescription medicines, but allows drug manufacturers to provide information to the public on health and diseases. Our aim was to measure the frequency of disease awareness campaigns in Latvian media and assess their compliance with international and European standards. Methods: Materials on health/disease and treatments were collected between April and September 2015 from 12 newspapers and magazines and six online portals. Disease awareness campaigns were assessed using a previously developed instrument based on the WHO Ethical Criteria for Medicinal Drug promotion and European standards (EU law and pharmaceutical industry self-regulatory guidelines). Collected materials were used to examine the information provided on medical conditions and their diagnosis and treatment. The inter-rater reliability was calculated. Results: We collected 263 materials from print (n = 149) and online media (n = 114); 94 were news items and 169 were disease-awareness advertisements. Cancer, cardiovascular problems, allergies and respiratory diseases were common topics. Of the 157 campaigns assessed, non-compliance was identified in 149 cases (inter-rater reliability 90%), mainly due to misleading or incomplete information, lack of balance and the absence of a listed author/sponsor. Six disease awareness campaigns directly mentioned a pharmaceutical product by brand name and other four included the logo or name of a manufacturer, referred to a condition and indirectly mentioned a treatment, all in contravention with European law. Conclusions: The compliance of disease awareness campaigns in Latvian media with international and European standards is low. This raises concerns about the nature of information being conveyed. Through lack of balance, missing sponsorship information, and misleading or incomplete information, these campaigns could contribute to inaccurate self-diagnosis and generate demand among those who might not need medical treatment.publishersversionPeer reviewe

„Tada ji pažiūrėjo į mane ir pasakė: senatvė!“ Socialinių senėjimo reprezentacijų įtaka senyvo amžiaus žmonių chroniškų ligų patirčiai Latvijoje

This article discusses the impact of social representations of ageing, such as breakdown, inevitability of illnesses and unfitness, on chronic illness experience of elderly people in Latvia. The qualitative study is based on theoretical framework of symbolic interactionism and uses grounded theory methodology. The results of the study lead to the conclusion that in Latvia certain social representations of ageing have a negative impact on chronic illness experience of elderly people, decreasing health-related quality of life and hampering reception of required medical assistance, adaptation of environment to the needs of elderly people with chronic illnesses and successful incorporation of the chronic illness in the context of biography.Straipsnis analizuoja socialinių senėjimo reprezentacijų, tokių, kaip išsekimas, ligos neišvengiamumas ir netinkamumas, įtaką senyvo amžiaus žmonių chroniškų ligų patirtims Latvijoje. Ši kokybinė studija remiasi teoriniais simbolinio interakcionizmo teiginiais ir grindžiamosios teorijos metodologija. Tyrimo rezultatai leidžia daryti išvadą, kad tam tikros socialinės senėjimo reprezentacijos Latvijoje turi neigiamą poveikį tam, kaip senyvo amžiaus žmonės patiria chroniškas ligas. Tai savo ruožtu neigiamai veikia senyvų žmonių gyvenimo kokybę, siejamą su sveikata, trukdo jiems kreiptis į sveikatos apsaugos įstaigas reikalingos medicininės pagalbos ir sėkmingai inkorporuoti chroniškas ligas į savo biografijas. Kartu neigiamos socialinės senėjimo reprezentacijos neskatina pritaikyti fizinę aplinką senyvo amžiaus žmonių, sergančių chroniškomis ligomis, reikmėms

Risk Communication in Assisted Reproduction in Latvia: From Private Experience to Ethical Issues

The aim of this paper is to analyze the process of risk communication in the context of assisted reproduction in Latvia. The paper is based on a qualitative methodology and two types of data: media analysis and 30 semi-structured interviews (11 patients, 4 egg donors, 15 experts). The study explores a broad definition of risk communication and explores three types of risks: health, psychosocial, and moral. We ask (1), who is involved in risk communication, (2), how risks are discussed using different channels of communication, and (3), what ethical problems arise during this process. In the process of analysis, we identified four types of information channels and two strategies of risk communication used by patients, as well as several ethical problems. In our view, the analysis of risk communication practices is significant to improve patient/physician relationship, as well as better meet patients' needs for comprehensive risk information