Natalie Evans | Vrije Universiteit Amsterdam (original) (raw)

Papers by Natalie Evans

PLOS ONE, 2020

EU legislation prohibits clinical trials that modify germ line 'genetic identity'. 'Genetic ident... more EU legislation prohibits clinical trials that modify germ line 'genetic identity'. 'Genetic identity' however, is left undefined. This study aims to identify the use of the term 'genetic identity' in academic literature, and investigate its relevance for debates on genetic modification. A total of 616 articles that contained the term were identified. Content analysis revealed that the term was used in various and contradicting ways and a clear understanding of the term is lacking. This review demonstrates that the EU legislation is open to interpretation, because of the diversity of meaning with which 'genetic identity' is currently used. Because of the diversity of meaning with which 'genetic identity' is used and understood, further reflection is needed. This requires further medical, legal, ethical and social debate and a coordinated response at both a European and a global level.

AMA Journal of Ethics, 2019

People with genetic predispositions to disease are faced with uncertainty about whether, when, an... more People with genetic predispositions to disease are faced with uncertainty about whether, when, and to what extent an illness will actually develop. This prognostic uncertainty, combined with knowledge that preventative interventions (eg, risk-reducing surgeries for familial cancer syndromes) could significantly affect people's lives, renders prevention decisions especially challenging. This article illuminates ethical questions about the use of decision aids for people with genetic predispositions and calls for approaching individual decisions in light of ongoing communication and reflection about a person's life goals and values. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place. Susan Sontag 1 Decision Making and Genetic Risk As Sontag's quote boldly illustrates, health and illness are generally seen as dichotomous categories: one is either sick or healthy. Yet the rapid development and implementation of genomic medicine is challenging this duality by increasing the presence of yet another type of "citizenship"-namely, for those who are "genetically at-risk." 2 In dealing with this new category, health services face several challenges, including how to communicate complex information on individual and familial risk and how to support decision making on preventative treatment options. 3

BMC public health, Oct 13, 2016

Malaysians have become increasingly obese over recent years. The transition from adolescence to e... more Malaysians have become increasingly obese over recent years. The transition from adolescence to early adulthood is recognized as critical for the development of eating and activity habits. However, little obesity-related research focuses on this life stage. Drawing on data from a health and demographic surveillance site in Malaysia, this article describes obesity and overweight amongst adolescents and young adults in a multi-ethnic population. Data were collected at the South East Asia Community Observatory (SEACO) in Segamat District, Johor. In this dynamic cohort of approximately 40,000 people, 5,475 were aged 16-35 in 2013-2014. The population consists of Malay, Chinese, Indian and Indigenous (Orang Asli) families in proportions that reflect the national ethnic diversity. Data were collected through health profiles (Body Mass Index [BMI] measurements in homes) and self-report questionnaires. Age and ethnicity were associated with overweight (BMI 25.0-29.9Kg/m(2)) and obesity (BMI...

World Development, 2013

The concept of autonomous adaptation is widely used to describe spontaneous acts of reducing risk... more The concept of autonomous adaptation is widely used to describe spontaneous acts of reducing risks posed by resource scarcity and, increasingly, climate change. Critics, however, have claimed it is unproven, or simplifies the agency by which smallholders respond to risk. This paper presents empirical research in eight Karen villages in Thailand to identify how resource scarcity is linked to adaptive responses including livelihood diversification. The paper argues that autonomous adaptation is driven by how environmental change and scarcity present livelihood risks, rather than physical risks alone. Adaptation planning therefore should acknowledge different experiences of risk, and socioeconomic barriers to adaptation.

Science and Public Policy

There is little research on the content of research integrity (RI)–related guidance provided by p... more There is little research on the content of research integrity (RI)–related guidance provided by pan-European discipline-specific learned societies, or how this guidance compares with recommendations made in the European Code of Conduct for Research Integrity (ALLEA code). Therefore, we aimed to (1) assess the availability of RI guidance from these learned societies, (2) compare learned societies’ guidance with the ALLEA code, and (3) explore similarities and differences in guidance between learned societies of different disciplines. Using a scoping review, we identified 245 learned societies, from which we identified and conducted a content analysis of fifty-eight guideline documents, developed by forty-six of these learned societies. Less than 25 per cent of learned societies in any discipline provide guidance, and there are notable disciplinary differences. Recommendations made by learned societies, which are not reflected in the ALLEA code, relate primarily to research culture an...

Science and Engineering Ethics

Fostering research integrity (RI) increasingly focuses on normative guidance and supportive measu... more Fostering research integrity (RI) increasingly focuses on normative guidance and supportive measures within institutions. To be successful, the implementation of support should be informed by stakeholders’ experiences of RI support. This study aims to explore experiences of RI support in Dutch, Spanish and Croatian universities. In total, 59 stakeholders (Netherlands n = 25, Spain n = 17, Croatia n = 17) participated in 16 focus groups in three European countries. Global themes on RI support experiences were identified by thematic analysis. Themes identified were: ‘RI governance and institutional implementation’, ‘RI roles and structures’, ‘RI education and supervision’, and ‘Infrastructure, technology and tools supporting daily practice’. Experiences of support differed between countries in relation to: the efforts to translate norms into practice; the extent to which RI oversight was a responsibility of RE structures, or separate RI structures; and the availability of support clos...

Open Research Europe, 2022

The Embassy of Good Science (https://www.embassy.science) aims to improve research integrity and ... more The Embassy of Good Science (https://www.embassy.science) aims to improve research integrity and research ethics by offering an online, open, 'go-to' platform, which brings together all information on research integrity and research ethics relevant for researchers, and makes that information accessible, understandable, and appealing. It effectively organizes and describes research integrity and research ethics guidelines, educational materials, cases, and scenarios. The Embassy is wiki-based, allowing users to add -- when logged in with their ORCID researcher id -- new information, and update and refine existing information. The platform also makes the research integrity and research ethics community visible and accessible in pages dedicated to relevant initiatives, news and events. Therefore, the Embassy enables researchers to find useful guidance, rules and tools to conduct research responsibly. The platform empowers researchers through increased knowledge and awareness, a...

Research Ideas and Outcomes, 2021

Background: Recognising the importance of addressing ethics and research integrity (ERI) in Europ... more Background: Recognising the importance of addressing ethics and research integrity (ERI) in Europe, in 2017, the All European Academies (ALLEA) published a revised and updated European Code of Conduct for Research Integrity (ECoC). Consistent application of the ECoC by researchers across Europe will require its widespread dissemination, as well as an innovative training programme and novel tools to enable researchers to truly uphold and internalise the principles and practices listed in the Code. Aim: VIRT2UE aims to develop a sustainable train-the-trainer blended learning programme enabling contextualised ERI teaching across Europe focusing on understanding and upholding the principles and practices of the ECoC. Vision: The VIRT2UE project recognises that researchers not only need to have knowledge of the ECoC, but also to be able to truly uphold and internalise the principles underpinning the code. They need to learn how to integrate them into their everyday practice and understan...

Science and Engineering Ethics, 2021

To foster research integrity (RI), it is necessary to address the institutional and system-of-sci... more To foster research integrity (RI), it is necessary to address the institutional and system-of-science factors that influence researchers’ behavior. Consequently, research performing and research funding organizations (RPOs and RFOs) could develop comprehensive RI policies outlining the concrete steps they will take to foster RI. So far, there is no consensus on which topics are important to address in RI policies. Therefore, we conducted a three round Delphi survey study to explore which RI topics to address in institutional RI policies by seeking consensus from research policy experts and institutional leaders. A total of 68 RPO and 52 RFO experts, representing different disciplines, countries and genders, completed one, two or all rounds of the study. There was consensus among the experts on the importance of 12 RI topics for RPOs and 11 for RFOs. The topics that ranked highest for RPOs concerned education and training, supervision and mentoring, dealing with RI breaches, and supp...

Science and Public Policy, 2021

Education is important for fostering research integrity (RI). Although RI training is increasingl... more Education is important for fostering research integrity (RI). Although RI training is increasingly provided, there is little knowledge on how research stakeholders view institutional RI education and training policies. Following a constructivist approach, we present insights about research stakeholders’ views and experiences regarding how research institutions can develop and implement RI education and training policies. We conducted thirty focus groups, engaging 147 participants in eight European countries. Using a mixed deductive-inductive thematic analysis, we identified five themes: (1) RI education should be available to all; (2) education and training approaches and goals should be tailored; (3) motivating trainees is essential; (4) both formal and informal educational formats are necessary; and (5) institutions should take into account various individual, institutional, and system-of-science factors when implementing RI education. Our findings suggest that institutions should...

The Canadian Journal of Psychiatry, 2020

Objectives: Physician-assisted death (PAD), also known as medical assistance in dying, of patient... more Objectives: Physician-assisted death (PAD), also known as medical assistance in dying, of patients with a psychiatric disorder (PPD) is a global issue of debate. In most jurisdictions that allow PAD, irremediable suffering is a legal requirement, how to apply the concept of irremediability to PPD remains challenging. The aim of this article is to identify the main arguments concerning irremediability in the debate about PAD of PPD and give directions for further moral deliberation and empirical research. Methods: Systematic searches in MEDLINE, Embase, and PsycINFO were combined with 4 additional search strategies. All conceptual-ethical articles, quantitative and qualitative empirical studies, guidelines, case reports, and commentaries that met the inclusion criteria were included, and a qualitative data synthesis was used to identify recurring themes within the literature. The study protocol was preregistered at the Open Science Framework under registration code: thjg8. Results: A...

Latent class solution. (DOCX 14 kb)

Pallium, 2018

SamenvattingDe meeste mensen willen tot het eind van hun leven thuis blijven. Om dat mogelijk te ... more SamenvattingDe meeste mensen willen tot het eind van hun leven thuis blijven. Om dat mogelijk te maken, is mantelzorg cruciaal. Maar welke mantelzorgers en andere zorgverleners zijn er eigenlijk betrokken bij de zorg voor thuiswonende ouderen in het laatste levensjaar? En hoe kunnen mantelzorgers ondersteund worden?

BMC Palliative Care, 2019

Background: Home-based care networks differ in size and composition, but little is known about th... more Background: Home-based care networks differ in size and composition, but little is known about the characteristics of care networks for those nearing the end of their lives. This study aimed to identify different types of home-based care networks of community-dwelling older adults in the Netherlands and to assess the association between care network type and the health status and socio-demographic characteristics of care recipients. Methods/design: We used data from participants of the Longitudinal Aging Study Amsterdam (2001-2013) with chronic diseases or functional limitations who died within 12 months of their last interview and received home based personal and/or household care (n = 146). Latent Class Analysis was used to model distinct end-of-life care networks among this pooled cross-section of older people whose characteristics imply care needs. The Akaike information criterion was used to determine the optimal model. Associations between network type and care recipient characteristics were explored using conditional inference trees. Results: We identified four types of care networks; a partner network (19%) in which care was mainly provided by partners, with little care from private caregivers or professionals, a mixed network (25%) in which care was provided by a combination of children, professionals and/or other family members, a private network (15%) in which only privately paid care was provided, and a professional network (40%) in which care was mainly provided by publicly paid professionals, sometimes with additional care from family or privately paid caregivers. Care networks near the end of life showed similar characteristics to those identified for older people more generally, but care seemed to be more intensive in the last year of life compared to the years preceding it. End-of-life care networks were mostly related to age, educational level and partner status. Formal care substitutes informal care whenever there is no partner or child present and able to provide care. Conclusion: Our findings indicate that personal and household care can be quite intensive in the last year of life, especially for partner caregivers. To prevent caregiver burden, it is important that professionals make sure partner caregivers receive adequate and timely support to cope with the care situation.

Ageing and Society, 2017

ABSTRACTMalaysia has an ageing population and an increasing number of older people who live alone... more ABSTRACTMalaysia has an ageing population and an increasing number of older people who live alone. This study explores the social support and care arrangements of older people living alone in rural Malaysia. The study took a qualitative approach: semi-structured interviews were conducted with a purposive sample of Malay (N = 20) and Chinese (N = 20) Malaysians aged over 65. Five cross-cutting themes were identified through a thematic analysis: degrees of aloneness; relationships and social support; barriers to social support; and future illness, care and death. All participants said they lived alone; living arrangements, however, were often complex. For Malays, most support came from nearby adult children and relatives, whereas Chinese participants, who less frequently had adult children living locally, emphasised support from friends and neighbours. Emigrant adult children's assistance was mostly informational and financial, instrumental assistance was either substituted for mo...

Journal of the American Geriatrics Society, 2015

Global Health Action, 2015

Background: Verbal autopsies have gained considerable ground as an acceptable alternative to medi... more Background: Verbal autopsies have gained considerable ground as an acceptable alternative to medically determined cause of death. Unlike with clinical or more administrative settings for data collection, verbal autopsies require significant involvement of families and communities, which introduces important social and cultural considerations. However, there is very little clear guidance about the methodological issues in data collection. The objectives of this case study were: to explore the range of bereavement rituals within the multi-ethnic, multi-faith population of the district; to investigate the preparedness of communities to talk about death; to describe the verbal autopsy process; to assess the effects of collecting verbal autopsy data on data collectors; and to determine the most accurate sources of information about deaths in the community. Methods: A case study approach was used, using focus group discussions, indepth interviews and field notes. Thematic analyses were undertaken using NVivo. Results: Consideration of cultural bereavement practices is importance to acceptance and response rates to verbal autopsies. They are also important to the timing of verbal autopsy interviews. Well trained data collectors, regardless of health qualifications are able to collect good quality data, but debriefing is important to their health and well being. This article contributes to guidance on the data collection procedures for verbal autopsies within community settings.

BMJ Supportive & Palliative Care, 2013