This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and medicine, (...) truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

This paper considers the morally relevant ways in which population-based research is a distinct type of human subjects research that have unique moral considerations relevant for public health practitioners and researchers. By defining population-based research, the authors distinguish it from public health practice and then consider, in more detail, the ways in which population-based research differs from clinical human subjects research. Based upon the distinctions between these types of research and practice, they identify five (...) important issues that arise in the design and conduct of certain kinds of population-based research. The authors hope that public health practitioners find these distinctions useful in determining when their work may actually be population-based research and that public health researchers use them to identify the areas where ethical issues in their research may arise. (shrink)

Multiple scholars and institutions have asked what distinguishes public health research from public health practice. Most often, they ask in order to have a clear definition of what one does in various public health settings to assess oversight and/or regulation of human subjects research. More importantly, however, whether something is considered public health research or public health practice has real ethical implications in terms of the general moral considerations at stake and the obligations of public health researchers/practitioners (...) to the populations they serve or study.Numerous examples in recent history of research ethics, including the Kennedy Krieger Lead Abatement Study and EPA’s Children’s Environmental Exposure Research Study, suggest that an exploration of the ethics of public health, or more generally population-based research, may be warranted. Although we acknowledge that there are important ethical issues to consider in the implementation of public health practice, we leave that discussion for other authors. (shrink)

Rapid Ethical Assessment is an approach used to design context tailored consent process for voluntary participation of participants in research including human subjects. There is, however, limited evidence on the design of ethical assessment in studies targeting cancer patients in Ethiopia. REA was conducted to explore factors that influence the informed consent process among female cancer patients recruited for longitudinal research from Addis Ababa Population-based Cancer Registry. Qualitative study employing rapid ethnographic approach was conducted from May–July, 2017, at (...) the Tikur Anbessa Specialized Referral Hospital. In-depth and key informants’ interviews were conducted among purposively selected 16 participants. Regular de-briefings among the study team helped to identify emerging themes and ensure saturation. Interviews and debriefings were tape recorded in Amharic, and transcribed and translated to English. Coding of the transcripts was facilitated by use of NVivo software. Thematic analysis was employed to respond to the initial questions and interpret findings. Perceived barriers to voluntary study participation included lack of reporting back study results of previous studies, the decision making status of women, hopelessness or fatigue in the patients, shyness of the women, data collectors approach to the patient, and patient’s time constraints. Most of the patients preferred oral over written consent and face-to-face interview over telephone interview. Provision of detail information about the study, using short and understandable tool, competent, compassionate and respectful enumerators of the same gender were suggested to assure participation. Due to the perceived severity, the use of the term “cancer” was associated with fear and anxiety. Alternatively, uses of phrases like “breast or cervical illness/disease” were suggested during patient interviews. Voluntary participation is not straight forward but affected by different factors. Using competent, compassionate and respectful enumerators, short and precise questioning tools to limit the time of the interview could improve voluntary participation. Moreover, careful consideration of the patients and families concept of the disease such as wording and information has to be taken into account. This assessment helped in improving the consent process of the ongoing project on breast and cervical cancer patients. (shrink)

Register-based research can provide important and valuable contributions to public health research, but involves ethical issues concerning the balance of public health benefits and individual autonomy. This study aimed to describe the opinions of the Finnish public about these issues.

This paper advances a new criterion of a vulnerable population in research. According to this criterion, there are consent-based and fairness-based reasons for calling a group vulnerable. The criterion is then applied to the case of people with serious illnesses. It is argued that people with serious illnesses meet this criterion for reasons related to consent. Seriously ill people have a susceptibility to “enticing offers” that hold out the prospect of removing or alleviating illness, and this susceptibility reduces their (...) ability to safeguard their own interests. This explains the inclusion of people with serious illnesses in the Belmont Report’s list of populations needing special protections, and supports the claim that vulnerability is the rule, rather than the exception, in biomedical research. (shrink)

Like all community-based public health campaigns, proposals to use genetic information to improve the health and welfare of communities, whether the old eugenic sterilization campaigns or the routinized population screening programs of today's ‘public health genetics’, can involve asking affected individuals to make special sacrifices or assume special responsibilities on behalf of the community's welfare. Moreover, unlike public health interventions that restrict individual liberties in order to prevent health problems which all community members risk more or less equally, genetic prevention (...) strategies always require sacrifices on the part of the community who face the genetic risks in question on behalf of those who do not. The irony of ‘community genetics’ is that most human communities are much too heterogeneous to face universal gene pool disasters. (shrink)

Individual research results from population-based genetic and genomic research are traditionally not disclosed to research participants. Current practices of non-disclosure are, however, being challenged by an increasing number of scientists, ethicists and policy-makers who make arguments in favour of disclosing at least individual results of potential health or lifestyle significance to research participants. Simultaneously, research participants are expressing greater interest in accessing their results. This article first provides an overview of main arguments for and against (...) the disclosure of individual research results to research participants. Next, it discusses the need for a move from the current ethical framework under which researchers operate, which is rather protective of research participants and does not encourage disclosure, to a new ethical framework that would better cope with current developments within the field. Comparative analysis of existing and potential ethical frameworks favours implementation of an ethical framework aimed at enhancing the autonomy of research participants through the disclosure of individual research results. Finally, this article explores practical models of disclosure that could be used under such a new framework. A model of disclosure that takes into account the two key criteria of communicability of research results and the research participant’s preferences to determine which results to disclose is found to comply best with the selected ethical framework. (shrink)

Population-based research is enhanced by biological measures, but biological sampling raises complex ethical issues. The third British National Survey of Sexual Attitudes and Lifestyles (Natsal-3) will estimate the population prevalence of five sexually transmitted infections (STIs) (Chlamydia trachomatis, Neisseria gonorrhoeae, human papillomavirus (HPV), HIV and Mycoplasma genitalium) in a probability sample aged 16–44 years. The present work describes the development of an ethical approach to urine testing for STIs, including the process of reaching consensus on whether to return results. (...) The following issues were considered: (1) testing for some STIs that are treatable and for which appropriate settings to obtain free testing and advice are widely available (Natsal-3 provides all respondents with STI and healthcare access information), (2) limits on test accuracy and timeliness imposed by survey conditions and sample type, (3) testing for some STIs with unknown clinical and public health implications, (4) how a uniform approach is easier to explain and understand, (5) practical difficulties in returning results and cost efficiency, such as enabling wider STI testing by not returning results. The agreed approach, to perform voluntary anonymous testing with specific consent for five STIs without returning results, was approved by stakeholders and a research ethics committee. Overall, this was acceptable to respondents in developmental piloting; 61% (68 of 111) of respondents agreed to provide a sample. The experiences reported here may inform the ethical decision making of researchers, research ethics committees and funders considering population-based biological sampling. (shrink)

How might a design approach be applied to Research? Following Glanville’sGlanville, Ranulph observation that design and researchResearch are fundamentally related and that design methodsDesignmethods may be applied across domains, we framed a case study of the perceptual effects of alternate contemporary lighting technologies at an architectural scale to show how a designer/researcher could approach this kind of investigation. Design proceeds in complex domains with incomplete data and open questions. It is often concerned with the singular or unique solution rather (...) than with generalizability. Its products are applied under hybrid and dynamic, rather than controlled, conditions. Rather than work with subjects approximating a general population, informants were recruited with more extensive or diverse experiences than our own. Color perception was investigated in large-scaled installations allowing for locomotion and full visual immersion in a color-field. The effort was not to frame hypotheses for confirmation or refutation but probe the phenomena for insights. Design researchDesignresearch methods might be preferred when the nature of the investigation is exploratory or when ecological validity dominates reliability. They might also be useful in situations where significant progress is no longer being made within a particular paradigm by recasting the nature of the inquiryEnquiry outside the frameworks that presently dominate. (shrink)

The article provides an overview of arts-based research within social work and general healthcare practice in Canada, and how it can be used to uncover racism within vulnerable populations, particularly youth, women, immigrants and refugees, the lesbian, gay, bisexual, transgender, queer, and intersex community, and Indigenous peoples. This is a general review of the literature. A literature search was conducted using the University of Western Ontario’s Summons database, with coverage from January 2000 to February 2019. Data exploring participant experiences, (...) personal identity, voice, and invisible powers were extracted, and analyzed using a critical race lens to examine the intersection of societal and cultural practice with race and power.Results indicate that ABR can support therapeutic recovery from oppression by enhancing self-expression of feelings and thoughts, and affording participants the agency to reclaim and reframe their personal narrative. ABR can further generate a sense of community by creating connections between participants with similar oppressions to overcome disconnection and marginalization. Within a broader community context, ABR permits the sharing of stories and insights with others, which can generate dialogue on important social issues to expose areas of social inequity and oppression alongside potential solutions for transformative social action. This dialogue can also extend to discussions with policy makers on the impact of social inequities to guide recommendations that address system gaps for broader community-level change. The paper concludes that ABR can move beyond merely reflecting on social conditions toward actively addressing them by promoting sustainable social change. The voices expressed through ABR illustrate possible solutions to overcome racism through inclusive social practice, deconstruction of the racial status quo, and movement toward an equitable distribution of power. (shrink)

Objectives To investigate empirically the motivations for not consenting to DNA biobanking in a Swedish population-based study and to discuss the implications. Design Structured questionnaires and semistructured interviews. Setting A longitudinal epidemiological project (PART) ongoing since 1998 in Stockholm, Sweden. The DNA-collection wave took place during 2006–7. Participants 903 individuals completed the questionnaire (participation rate 36%) and 23 were interviewed. All individuals had participated in both non-genetic waves of the project, but refused to contribute saliva samples during the DNA-collection wave. (...) Main outcome measures Motivations behind refusing to consent to DNA biobanking, with subsequent focus on participants' explanations regarding this unwillingness. Results Public refusal to consent to DNA biobanking, as revealed by the questionnaire, was mainly explained by a lack of personal relevance of DNA contribution and feelings of discomfort related to the DNA being used for purposes other than the respective study. Interviews of individuals representing the second motivation, revealed a significant mistrust of DNA biobank studies. The underlying beliefs and attitudes were associated with concerns about integrity, privacy, suspiciousness and insecurity. However, most interviewees were supportive of genetic research per se and interpreted their mistrust in the light of distressing environmental influences. Conclusion The results suggest a need for guidelines on benefit sharing, as well as trustworthy and stable measures to maintain privacy, as a means for increasing personal relevance and trust among potential participants in genetic research. Measures taken from biobanks seem insufficient in maintaining and increasing trust, suggesting that broader societal measures should be taken. (shrink)

Objective: Population based cohort studies involving genetic research have been initiated in several countries. However, research published to date provides little information on the willingness of the general population to participate in such studies. Furthermore, there is a need to discover the optimal methods for acquiring fully informed consent from the general population. We therefore examined the results of a population based genetic cohort study to identify the factors affecting the participation rate by members of the general public (...) and also specifically to examine the impact of different consent procedures on the rate of participation by prospective candidates and their subsequent withdrawal rate from the study.Design: Descriptive analyses.Setting and participants: The study evaluated two non-genetic subcohorts comprising 3166 people attending for a health checkup during 2002, and two genetic subcohorts comprising 2195 people who underwent a checkup during 2003.Main outcome measurements: Analysis endpoints were differences in participation rates between the non-genetic and genetic subcohorts, differences between providing non-extensive and extensive preliminary information, and changes in participation status between baseline and at 6 months.Results: Participation rates in the genetic subcohorts were 4·7–9·3% lower than those in the non-genetic subcohorts. The odds ratios of participation in genetic research were between 0·60 and 0·77, and the OR for withdrawal from the research was over 7·70; providing preliminary extensive information about genetic research reduced the withdrawal risks but worsened participation rates .Conclusions: The general population responded sceptically towards genetic research. It is crucial that genetic researchers utilise an informative and educational consent process worthy of public trust. (shrink)

AimThe aim was to explore the various associations between subjective well-being and internet use among older adults in two regions in Finland and Sweden.MethodsThe data was collected through a population-based survey as part of the GERDA project conducted in 2016. The connection between subjective well-being and internet use was studied by conducting binary regression analyses, calculating odds ratios with 95% confidence intervals. The analyses also controlled for key subjective well-being covariates.ResultsStatistically significant associations were found between perceived life meaningfulness and internet (...) use. When looking into the specific internet-based activities under study, activities related to leisure and entertainment showed statistically significant associations to perceived meaningfulness as well as perceived happiness, also after controlling for potential covariates. However, internet use and the different internet activities failed to show statistical significant associations to life satisfaction in the adjusted regression model.ConclusionThe things we do on the internet as well as how we conceptualize and measure subjective well-being in this type of research studies seem to matter when it comes to the relationship between subjective well-being and internet use in later life. Internet use and internet activities displayed various connections to the subjective well-being proxies used in this study. Therefore, the complexity and multidimensionality of both subjective well-being and internet use and related links need to be carefully explored in order to deepen our understanding of experienced well-being among older adults in a digitized world. (shrink)

Despite the growing population of youth identifying with a transgender or nonbinary gender identity, research on gender-diverse individuals’ educational outcomes is limited. This study takes advantage of the first nationally representative, population-based data set that includes measures of gender identity and educational outcomes: the High School Longitudinal Study of 2009. Using minority stress and structural symbolic interactionist frameworks, we examine the association between gender identity and high school and college educational outcomes. We compare the educational outcomes of gender-diverse youth—binary (...) transgender, nonbinary, and gender unsure—with those of cisgender youth, and also examine differences within the gender-diverse population. Given the strong link between minority stress and educational experiences among gender-diverse youth, we examine differences in outcomes before and after accounting for school belonging and emotional distress. We also account for individuals’ social-structural location, arguing that social positionality shapes both gender identity and educational outcomes. Results indicate important differences in educational outcomes within the gender-diverse population: Whereas binary transgender and gender-unsure youth exhibit educational disadvantage, relative to cisgender youth, nonbinary youth do not. The gender-unsure disadvantage remains even after accounting for differences in social-structural location and social-psychological factors associated with minority stress. (shrink)

Mental health surveys are used extensively in epidemiological research worldwide. The ethical questions that arise regarding their risk of causing psychological distress or other potential harm have not been studied in the general population. We have investigated how study participants serving as controls in a population-based study perceived an anonymous postal questionnaire focusing on mental health and wellbeing. Parents were contacted from the Swedish Census Bureau as part of a larger follow-up study on palliative care conducted in 2001. Eligible (...) parents had a child of the same gender, year of birth and were from the same counties in Sweden as parents who had lost a child to cancer. Five percent reported being negatively affected. The principle negative effect on participants was that self-reflection reminded them of their difficulties. Of the 418 respondents, 52% reported that they were positively affected by study participation and 95% perceived the inquiry as valuable. These findings support the use of population-based controls in future research. (shrink)

Citizen attitudes and opinions form an important driving force for improvements in the ethical status of farm animals in society. Hence, it is important to understand how attitudes to farm animals vary in society and what factors, mechanisms and social processes influence the development of these attitudes. In this study we examine the relative importance of socio-demographic background, animal related experiences and social-equality attitudes in the formation of attitudes to farm animals in Finland. The research is based on a (...) nationwide survey. Our research findings suggest that female gender, young age, urban residency, a non-farming background and social-equality attitudes are linked to greater concern for farm animals. A farming background, valuing social equality, and gender have the strongest connections to farm animal attitudes, followed by age and place of residence. Having a companion animal and education level have a relatively modest connection to attitudes to farm animals. In order to accumulate comparative evidence of social-group differences in attitudes to farm animals, further research should continue to develop improved indicators for attitudes to farm animal welfare and rights. Moreover, explanations for social-group differences in citizen attitudes to farm animals should be subjected to further empirical testing. (shrink)

Mental health issues are becoming increasingly prevalent amongst university students. However, research on the psychological profile of the general university population is relatively limited. Thus, this study analyses the current state of university students’ psychological conditions; the demographic differences in depression, anxiety, and stress and the influencing factors. The objectives are to provide additional appropriate guidance in mental health for university students with different demographic characteristics. A cross-sectional study of 6,032 university students nationwide was conducted from October 2020 to (...) January 2021. A randomized whole-group sampling method was used to select the study participants, and the 21-item Depression, Anxiety, and Stress Scale was used. P < 0.05 in the final model were considered statistically significant. The number of university students with no complain of depression, anxiety, or stress was 3,751. The odds of developing complain of depression were higher amongst anxious respondents and senior year than their counterparts. Students with “myopia” were 1.263 times more likely to be anxious. In terms of “impaired” or not, impaired is defined as any injury, such as sprain, strain, and fracture, “impaired” university students were 1.321 times more likely to be anxious. Furthermore, history of impairment and myopia increased the odds of stress by 1.305 and 1.305, respectively. Myopia, physical-activity-related injury and irrational eating habits are risk factors for complain of anxiety and stress. Males, upper grades, low parental education, and irrational eating habits are risk factors for complain of depression. Low physical activity levels are also an influential factor for complain of depression. DASS consists of interchangeable risk factors and multiple complains of DASS may coexist. (shrink)

While a growing number of researchers are embracing Internet-based data collection methods, the adoption of Internet-based recruitment methods has been relatively slow. This may be because little is known regarding the relative strengths and weaknesses of different methods of Internet-based participant recruitment, nor how these different recruitment strategies impact on the data collected. These issues are addressed in this article with reference to a study comparing the effectiveness of three Internet-based strategies in recruiting cannabis users for an online study. Consideration (...) of the recruitment data leads us to recommend that researchers use multipronged Internet-based recruitment campaigns with appropriately detailed recruitment messages tailored to the population of interest and located carefully to ensure they reach the intended audience. Further, we suggest that building rapport directly with potential participants, or utilising derived rapport and implicit endorsements, is an important aspect of successful Internet-based participant recruitment strategies. (shrink)

A challenge in human genome research is how to describe the populations being studied. The use of improper and/or imprecise terms has the potential to both generate and reinforce prejudices and to diminish the clinical value of the research. The issue of population descriptors has not attracted enough academic attention outside North America and Europe. In January 2012, we held a two-day workshop, the first of its kind in Japan, to engage in interdisciplinary dialogue between scholars in the (...) humanities, social sciences, medical sciences, and genetics to begin an ongoing discussion of the social and ethical issues associated with population descriptors. (shrink)

Concerns that cash payments to people who inject drugs (PWID) to reimburse research participation will facilitate illicit drug purchases have led some ethical authorities to mandate department store/supermarket vouchers as research reimbursement. To examine the relative efficacy of the two forms of reimbursement in engaging PWID in research, clients of two public opioid substitution therapy clinics were invited to participate in a 20–30 min, anonymous and confidential interview about alcohol consumption on two separate occasions, 4 months apart. (...) Under the crossover design, at Time 1, clients of Clinic 1 were offered $A20 cash as reimbursement, while clients of Clinic 2 were offered an $A20 voucher; at Time 2, the form of reimbursement was reversed. Using clinic records to determine the denominator (number of clients dosed), we found that compared with clients offered a voucher, a significantly higher proportion of clients who were offered cash participated in the survey (58% (139/241) vs 74% (186/252); χ2=14.27; p=0.0002). At first participation, respondents most commonly reported planning to purchase food/drinks/groceries (68%), cigarettes (21%) and transport/fuel (11%) with their payments, with those reimbursed in cash more likely to report planning to fund transport/fuel (19% vs 1%; p<.01) and less likely to report planning to purchase food/drinks/groceries (62% vs 76%; p=0.02). Just three out of 155 cash participants reported planning to purchase illicit drugs with their payment. Results demonstrate that modest cash payments enhanced recruitment of this group, an important consideration given the challenges of delineating the parameters of a population defined by illegal activity, seemingly without promoting excessive additional drug use. (shrink)

Geron recently announced that it had begun enrolling patients in the world's first-in-human clinical trial involving cells derived from human embryonic stem cells (hESCs). This trial raises important questions regarding the future of hESC-based therapies, especially in spinal cord injury (SCI) patients. We address some safety and efficacy concerns with this research, as well as the ethics of fair subject selection. We consider other populations that might be better for this research: chronic complete SCI patients for a safety (...) trial, subacute incomplete SCI patients for an efficacy trial, and perhaps primary progressive multiple sclerosis (MS) patients for a combined safety and efficacy trial. (shrink)

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and (...) minimize collective risks that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)

Research on human genetic variation can present collective risks to all members of a socially identifiable group. Research that associates race or ethnicity with a genetic disposition to disease, for example, presents risks of group discrimination and stigmatization. To better protect against these risks, some have proposed supplemental community-based reviews of research on genetic differences between populations. The assumption behind these appeals is that involving members of study populations in the review process can help to identify and (...) minimize collective risks that otherwise could go unnoticed. In contrast to this position, critics have argued that supplemental community-based reviews are unnecessary, impractical, and morally problematic. This paper is our attempt to advance this debate by distinguishing the various goals of community review and the forms that it can take. (shrink)

Community-based participatory research (CBPR) focuses on specific community needs, and produces results that directly address those needs. Although conducting ethical CBPR is critical to its success, few academic programs include this training in their curricula. This article describes the development and evaluation of an online training course designed to increase the use of CBPR in mental health disciplines. Developed using a participatory approach involving a community of experts, this course challenges traditional research by introducing a collaborative process meant (...) to encourage increased participation by special populations and narrow the parity gap in effective mental health treatment and services delivery. (shrink)

This paper examines potential ethical and legal issues arising during the research, develop- ment and clinical use of a proposed strategy in personalized medicine (PM): using human induced pluripotent stem cell (iPSC)-derived tissue cultures as predictive models of individ- ual patients to inform treatment decisions. We focus on epilepsy treatment as a likely early application of this strategy, for which early-stage stage research is underway. In relation to the research process, we examine issues associated with biological samples; (...) data; health; vulnerable populations; neural organoids; and what level of accuracy justifies using the iPSC-derived neural tissue system. In relation to clinical use, we examine potential uses in pre-natal screening, and effects on clinical decision-making. Although our focus is providing recommendations for researchers developing work in this area, we identify the novel issue of deciding on an acceptable accuracy level for the system. We also emphasize an issue thus far neglected in the ethics of PM: PM tends to represent treatment decisions as though they should be directed solely by biomedical information, but this in itself could be detri- mental to best personalizing treatment decisions in the clinic. (shrink)

The Daily Spiritual Experience Scale is an instrument designed to provide researchers with a self-report measure of spiritual experiences as an important aspect of how religiousness/spirituality is expressed in daily life for many people. The sixteen-item scale includes constructs such as awe, gratitude, mercy, sense of connection with the transcendent, compassionate love, and desire for closeness to God. It also includes measures of awareness of discernment/inspiration and transcendent sense of self. This measure was originally developed for use in health studies, (...) but has been increasingly used more widely in the social sciences, for program evaluation, and for examining changes in religious/spiritual experiences over time. It has been included on the U. S. General Social Survey , and the items have shown high prevalence in that population. The challenge of identifying items that tap the underlying constructs was addressed through qualitative methods, both in the development and testing of the instrument. Translations have been made into Spanish, Korean, Hebrew, Vietnamese, and French, and the scale has been effectively used outside the United States. Detailed discussion of item construction based on qualitative work is given to assist in use, interpretation and translation development. Options for scoring and suggestions for exploring correlations with other variables using individual items and subgroups are also presented. (shrink)

In genomic research, cohort and large-scale population studies are proliferating along with accompanying infrastructures (databases and biobanks). Population-based research links samples and data from multiple sources often obtained for other purposes. The normative frameworks of many countries are largely based on 1980 OECD principles which limit the uses of personal data, especially for secondary purposes. These limits, now found in legislation, policies and research guidelines, pose major barriers to population-based research.This text examines similarities and differences between (...) epidemiology, public health research and genomics. It also distinguishes between primary and secondary uses of personal information. In a comparative and critical analysis of the normative landscapes of five countries, Québec (Canada), Germany, Australia, the United States and the United Kingdom, three barriers are identified: the impracticability of re-consent; the shortcomings of the review process (ethics and privacy) and certain multi-jurisdictional issues. Recommendations are proposed. (shrink)

Path selection is one of the key technologies of wireless sensor network. A reasonable choice of coverage path can improve the service quality of WSN and extend the life cycle of WSN. Biogeography-based optimization is widely used in the field of cluster intelligent optimization because its search method has a better incentive mechanism for population evolution. In this paper, the move-in and move-out operation and mutation operation of the BBO algorithm enable WSN to find an efficient routing path. In this (...) paper, simulation experiments are carried out in two scenarios of regular deployment and random deployment of WSN nodes. The experimental results show that the quality of the WSN coverage path solution optimized by the BBO algorithm in the two scenarios is better than that of the particle swarm algorithm and genetic algorithm. (shrink)

The sustainable development of the human settlements has become a global universal program. The comparison of cities in different countries is of great significance to provide international experience for future urban construction. Combined with the UN 2030 Sustainable Development Goals, this paper establishes an evaluation index system for the sustainable development ability of urban HS and constructs a three-dimensional research framework of “development-coordination-sustainability,” which compares the sustainable development ability of the HS of Dalian, China, and Kobe, Japan, from 2005 (...) to 2018 and explores the spatial evolution characteristics and obstacle factors of the HS of the two cities. The results show that the development degree of the HS of the two cities is on the rise. The development level of Kobe is always higher than that of Dalian, and the gap is gradually narrowing; Kobe has advantages in natural and residential environment, while Dalian has advantages in cultural and economic environment. The coordination degree of the development of the HS of the two cities has improved steadily, and the coordination degree of Kobe is better than that of Dalian. The sustainability of the development of the HS of the two cities is fluctuating, and the average sustainable growth rate of Dalian is higher than that of Kobe. The sustainable development space of the HS in Dalian presents a pattern of “high in the south and low in the north,” and the spatial characteristics of the subsystems are different; the main obstacles have changed from economic-natural to economic-natural-cultural-public services, and the obstacles to development in districts are different. The sustainable development space of the HS in Kobe has a high level of development in the southeast, radiating to the surrounding area, and the spatial characteristics of the subsystems are different; the main obstacles have changed from economic-cultural-natural to economic-natural-population, and the obstacles to development in districts are different. Finally, it puts forward targeted suggestions for the sustainable construction of Dalian. This paper can provide methodological reference for quantitative assessment of the sustainable development of HS and provide policy reference for scientific planning of the construction of HS. (shrink)

Researchers conducting large community-based studies among underserved populations may collect data on health conditions that are little-acknowledged in the local setting, and for which there are few if any services for referral of participants who need follow-up diagnosis and care. In the design and planning of studies for such settings, investigators and research ethics committees may struggle to determine what constitutes effective referral and whether it is reasonably available. We offer a guiding framework for referral planning, informed by our (...) experiences of research in the field and of service on research ethics committees, to support evaluation of local referral resources and consideration of the benefits, burdens and risks of referral in the local setting. The framework addresses both the impact of referral on the well-being of the people who would be referred and the impact that referral of study participants would have on local people outside the study. We use a sustained discussion of three field-based case examples to illustrate the ethical concerns at issue and to demonstrate the use of the referral planning framework. (shrink)

RACINE L and PETRUCKA P. Nursing Inquiry 2011; 18: 12–20 Enhancing decolonization and knowledge transfer in nursing research with non-western populations: examining the congruence between primary healthcare and postcolonial feminist approachesThis article is a call for reflection from two distinct programs of research which converge on common interests pertaining to issues of health, social justice, and globalization. One of the authors has developed a research program related to the health and well-being of non-western populations, while the other (...) author has expanded the field of Aboriginal and international research in Canada and abroad. Based on examples drawn from our respective programs of research, we suggest conciliating the philosophy of primary healthcare to postcolonial feminism for decolonizing research and enhancing knowledge transfer with non-western populations. We contend that applying the theoretical and methodological strengths of these two approaches is a means to decolonize nursing research and to avoid western neocolonization. In conciliating primary health care and postcolonial feminism, the goal is to enhance the pragmatic relevance of postcolonial feminism to generate resistance through transformative research for achieving social justice. In tapping into the synergistic and complementary epistemological assumptions of the philosophy of primary health care and postcolonial ‘feminisms’, nurse researchers reinforce the anti-oppresive goals of postcolonial feminist research. Consequently, this approach may enhance both decolonization and knowledge transfer through strategies like photovoice. (shrink)

Despite ample evidence of the efficacy and effectiveness of evidence-based parenting programmes (EBPPs) within research-led environments, there is very little evidence of maintenance of effectiveness when programmes are delivered as part of regular service provision. The present study examined the effectiveness of EBPPs provided during a period of sustained service-led implementation in comparison to research-led effectiveness evaluation. Data from 3706 parents who received EBPPs during sustained implementation by services were compared to data from 1390 parents who had participated (...) in an earlier researcher-led effectiveness trial of a national roll-out of EBPPs in England. In both phases, parents completed measures of child behaviour problems, parenting style and parental mental well-being prior to starting parenting programmes (pre-test), at the end of the programmes (post) and at 12-months follow up. Results from Generalised Estimating Equations controlling for potential covariates indicated significant improvements in child behaviour problems during sustained implementation, similar to the effectiveness phase; significant improvements in parenting style which were larger than the effectiveness phase at 12-month follow up; and significant improvements in parental mental well- being. Our findings demonstrate effective maintenance of gains when EBPPs are provided as part of regular provision across a large sample of English parents. Successful long-term implementation should consider effectiveness of EBPPs across the population, given the large contextual changes that take place between researcher-led evaluations and service take-up. Our findings support the integration of EBPPs in public health approaches to addressing child behaviour problems and parent well-being. (shrink)

There is substantial literature on fetal alcohol spectrum disorder research involving Aboriginal children, but little related literature on other common neurodevelopmental conditions such as autism spectrum disorder or cerebral palsy for this population. As part of our work in cross-cultural neuroethics, we examined this phenomenon as a case study in Canada. We conducted semi-structured interviews with health researchers working on the frontline with First Nation communities to obtain perspectives about: reasons for the lack of ASD and CP research (...) within the Aboriginal context, the potential ethical and social implications of this disparity, and recommendations for change. Participants reported that the major barriers to engage in ASD or CP research are under-reporting and under-diagnosis of these conditions in Aboriginal communities, difficulties in establishing trust between community members and researchers, challenges in accessing children living under the care of child welfare services, and lack of support from universities and funding agencies to encourage community partnerships. They further perceived threats to justice as the population is denied the benefits of ASD and CP research, and stigma related to the possible over-representation of FASD in the population. The adoption of strength- and community-based practices to improve engagement and address disparities, and to create health databases with prevalence rates that are representative of all forms of disability in both Aboriginal and non-Aboriginal populations are critical steps to close these gaps. (shrink)

At least below the level of species, biological populations are not mind‐independent objects that scientists discover. Rather, biological populations are pragmatically constructed as objects of investigation according to the aims, interests, and values that inform particular research contexts. The relations among organisms that are constitutive of population‐level phenomena (e.g., mating propensity, genealogy, and competition) occur as matters of degree and so give rise to statistically defined open‐ended biological systems. These systems are rendered discrete units to satisfy practical needs and (...) theoretical preferences associated with specific contexts of investigation. While it may be possible to defend a realist position regarding biological relations among organisms, biological populations are “made” when contextual features determine which kinds and degrees of relations to privilege over others, and so how to bound genes in space and time. Consequently, the objectivity of population‐based approaches to species genome diversity cannot rest in the mind‐independence of populations themselves. (shrink)

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to (...) building trustworthiness. Drawing on these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Wildlife populations in the northern reaches of the globe have long been observed to fluctuate or cycle periodically, with dramatic increases followed by catastrophic crashes. Focusing on the early work of Charles S. Elton, this article analyzes how investigations into population cycles shaped the development of Anglo-American animal ecology during the 1920s–1930s. Population cycling revealed patterns that challenged ideas about the “balance” of nature; stimulated efforts to quantify population data; and brought animal ecology into conversation with intellectual debates about natural (...) selection. Elton used the problem of understanding wildlife population cycles to explore a central tension in ecological thought: the relative influences of local conditions (food supply, predation) and universal forces (such as climate change and natural selection) in regulating wild animal populations. He also sought patronage and built research practices and the influential Bureau of Animal Population around questions of population regulation during the 1930s. Focusing on disease as a local population regulator that could interact with global climatic influences, Elton facilitated an interdisciplinary and population-based approach in early animal ecology. Elton created a network of epidemiologists, conservationists, pathologists and mathematicians, who contributed to population cycle research. I argue that, although these people often remained peripheral to ecology, their ideas shaped the young discipline. Particularly important were the concepts of abundance, density, and disease; and the interactions between these factors and natural selection. However, Elton’s reliance on density dependence unwittingly helped set up conditions conducive to the development of controversies in animal ecology in later years. While ecologists did not come to consensus on the ultimate causes of population cycles, this phenomenon was an important early catalyst for the development of theory and practice in animal ecology. (shrink)

Background: COVID-19 has taken many lives worldwide and due to this, millions of persons are in grief. When the grief process lasts longer than 6 months, the person is in risk of developing Complicated Grief Disorder. The CGD is related to serious health consequences. To reduce the probability of developing CGD a preventive intervention could be applied. In developing countries like Mexico, the psychological services are scarce, self-applied interventions could provide support to solve this problem and reduce the health impact (...) even after the pandemic has already finished.Aims: To design and implement a self-applied intervention composed of 12 modules focused on the decrease of the risk of developing CGD, and increasing the life quality, and as a secondary objective to reduce the symptomatology of anxiety, depression, and increase of sleep quality. The Intervention Duelo COVID follows the principles of User Experience and is designed according to the needs and desires of a sample of the objective participants, to increase the adherence to the self-applied intervention, considered one of the main weaknesses of online interventions.Methods: A Randomized Controlled Trial will be conducted from the 22nd of December of 2020 to the first of June 2021. The participants will be assigned to an intervention with elements of Cognitive Behavioral Therapy, Acceptance and Commitment Therapy, Mindfulness and Positive Psychology. The control group will be a wait-list condition, that will receive the intervention 1.5–2 months after the pre-measurement were taken. The Power Size Calculation conducted through G*Power indicated the need for a total of 42 participants, which will be divided by 21 participants in each group. The platform will be delivered through responsive design assuring with this that the intervention will adapt to the screen size of cellphones, tablets, and computers.Ethics and Dissemination: The study counts with the approval of the Research Ethics Committee of the Autonomous University of Ciudad Juárez, México, and it is registered in Clinical Trials. The article is sent and registered in clinical trials before the recruitment started. The results will be reported in future conferences, scientific publications, and media. (shrink)

Researchers in cultural evolutionary theory have recently proposed the foundation of a new field of research in cultural evolution named ‘epistemic evolution’. Drawing on evolutionary epistemology’s early studies, this programme aims to study science as an evolutionary cultural process. The paper discusses the way CET’s study of science can contribute to the philosophical debate and, vice versa, how the philosophy of science can benefit from the adoption of a cultural evolutionary perspective. Here, I argue that CET’s main contribution to (...) an evolutionary model of scientific growth comes from the application of ‘population thinking’ to science. Populationism offers a ‘variation based’ understanding of scientists’ epistemic and socio-epistemic criteria that is able to better accommodate the variegated preferences that intervene in scientific epistemic decisions. A discussion of the so called theory choice context is offered as an example of the way a populationist approach can shed new light on the operation of scientists’ epistemic choices. (shrink)

Interest among historians, philosophers and sociologists of science in population-based biomedical research has focused on the randomised controlled trial to the detriment of the longitudinal study, the temporally extended, serial observation of individuals residing in the same community. This is perhaps because the longitudinal study is regarded as having played a secondary role in the debates about the validity of populations-based approaches that helped to establish epidemiology as one of the constitutive disciplines of contemporary biomedicine. Drawing on archival data (...) and publications relating to the Baltimore Longitudinal Study of Aging, we argue however that the historical development of the longitudinal study is richer and more significant than has been appreciated. We argue that this history is shaped by the tension between two sets of epistemic practices, devices and norms. On the one side there were those who emphasised randomisation and sampling to evidence claims about, and justify policies with respect to, the aetiology of disease. On the other side there were those who evoked the technical repertoire of physiological research, especially the notion of the ‘model organism’, to argue for a different integration of the individual in modern society. (shrink)

A growing number of nurse researchers travel globally to conduct research in poor and underserved populations in developing nations. These researchers, while well versed in research ethics, often find it difficult to apply traditional ethical standards to populations in developing countries. The problem of applying ethical standards across cultures is explained by a long-standing debate about the nature of ethical principles. Fundamentalism is the philosophical stance that ethical principles are universal, while the anthropologically-based ‘multicultural’ model claims the philosophical (...) position that principles are culturally bound. The authors explicate the two philosophical stances and advocate a morally sensitive but moderate position of ‘ethical multiculturalism’ rather than favouring either of the above philosophical positions. The final section suggests ways to promote ethical multiculturalism while planning and conducting nursing research. (shrink)

ABSTRACT Background: Explaining technical terms in consent forms prior to seeking informed consent to recruit into trials can be challenging in developing countries, and more so when the studies are randomized controlled trials. This study was carried out to examine the opinions of researchers on ways of dealing with these challenges in developing countries. Methods: Recorded in‐depth interviews with 12 lecturers and five doctoral students, who had carried out research in developing countries, at a leading school of public health (...) in the United Kingdom. A purposive, snowballing approach was used to identify interviewees. Results: Researchers were divided on the feasibility of explaining technical trials in illiterate populations; the majority of them held the view that local analogies could be used to explain these technical terms. Others were of the opinion that this could not be done since it was too difficult to explain technical trials, such as randomized controlled trials, even to people in developed countries. Conclusion: Researchers acknowledged the difficulty in explaining randomized controlled trials but it was also their perception that this was an important part of the ethics of the work of scientific research involving human subjects. These difficulties notwithstanding, efforts should be made to ensure that subjects have sufficient understanding to consent, taking into account the fact that peculiar situations in developing countries might compound this difficulty. (shrink)