The ethics and implications of paying participants in qualitative research

It appears that the practice of giving cash or gift vouchers to research participants is becoming increasingly common; however, this practice has received little attention from social researchers. Paying participants has implications in terms of the ethical requirement for consent and may have consequences in terms of recruitment for research projects and for the data collected. In this paper I consider how these issues arose in a research project with lone mothers and the way in which offering payments might help with gaining access to participants. I argue that the possible impact of making payments to research participants should be considered in research accounts and the possible impacts of payments should be more widely debated.     

Social network research and human subjects protection: Towards more effective infectious disease control

The issue of human subject protection in relation to social network research on the spread and control of human pathogens is considered. As this area derives most of its concepts and methods from social network analysis more generally, the present discussion has wider relevance. One problem is that some Institutional Review Boards (IRBs) have assumed that if a participant (who gave informed consent) is to be asked to name network associates these too — automatically — would be human subjects from whom informed consent also must be obtained. Invariably, if this occurs proposed research — whatever its funding and potential contributions might be — is blocked. A conservative approach is taken here. The Common Rule is assumed to provide relevant guidance, the responsibility of IRBs is to make decisions based on the Common Rule, and in consequence the burden is on those proposing social network research to design — and defend — their planned work with this in mind. At the same time, it is argued that it is important not to stifle beneficial research by adding to one inherently conservative review process (of grant proposals) another (of IRBs) so that work is prevented simply because it is research at the frontiers rather than ‘safe’ research.     

Sources,Characteristics and Effects of Mass Media Communication on Science: A Review of the Literature,Current Trends and Areas for Future Research

A significant amount of science coverage can be found nowadays in the mass media and is the main source of information about science for many. Accordingly, the relation between science and the media has been intensively analyzed within the social scientific community. It is difficult to keep track of this research, however, as a flurry of studies has been published on the issue. This article provides such an overview. First, it lays out the main theoretical models of science communication, that is, the ‘public understanding of science’ and the ‘mediatization’ model. Second, it describes existing empirical research. In this section, it demonstrates how science’s agenda‐building has improved, how science journalists working routines are described, how different scientific disciplines are presented in the mass media and what effects these media representations (might) have on the audience. Third, the article points out future fields of research.     

The aging male in Malaysia

Interest in clinical investigations about the health-related quality of life (HRQoL) of aging men has increased in recent years. The aim of this paper is to inform the scientific community about a harmonized French Aging Males' Symptoms (AMS) Scale. There were two slightly different French AMS Scales, which both underwent an up-to-date linguistic and cultural translation process, i.e. were valid to be applied in research. However, it was felt to be unfortunate that two versions of one language in one country existed. Therefore, an ad hoc committee of both translation teams were asked to develop a harmonized single French AMS Scale. The harmonization meeting developed a consensus item-by-item and the new French reference scale was agreed upon. It was agreed that only this scale should be published to avoid confusion among future users. The French AMS Scale published in this paper should be used for future research and necessary cultural/linguistic adaptations in the French-speaking world.     

Ethical Considerations and Dilemmas Before,during and after Fieldwork in Less-Democratic Contexts: some Reflections from Post-Uprising Egypt

How do we conduct ethically sound social research in less- or non-democratic settings? Here, the ‘ethical guidelines,’ or ‘codes of conduct’ outlined by our professional organizations provide some, albeit only insufficient guidance. In such contexts, issues like informed consent or the avoidance of harm to research participants have to be – based on a careful analysis of the situation on the ground – operationalized. What are, considering the particular social and political context in the field, the potential risks for interviewees and the researcher, and what can be done to eliminate or at least mitigate these risks? Reflecting on extensive fieldwork on the role of the prodemocracy movement during the Egyptian Uprising of 2011 in the wake of the so-called ‘Arab Spring,’ this study illustrates how rather abstract ethical considerations can be handled practically in an environment that is characterized by increasing levels of political repression and decreasing civil liberties. It is in such contexts that a failure to carefully consider such ethical questions entails a very real risk of endangering the livelihoods and even lives of research participants. Furthermore, it is shown that these and similar issues are not only of critical importance when designing a research project, but that they might have to be revisited and renegotiated at later stages of the research process – even after the conclusion of the data collection phase. Here, questions of data protection, anonymity of informants, and the associated ‘do no harm’ principle are particularly pertinent.     

Using face validity to recognize empirical community observations

There is a growing interest among international planning scholars to explore community participation in the plan making process from a qualitative research approach. In this paper the research assessment tool “face validity” is discussed as one way to help planners decipher when the community is sharing empirically grounded observations that can advance the applicability of the plan making process. Face validity provides a common sense assessment of research conclusions. It allows the assessor to look at an entire research project and ask: “on the face of things, does this research make sense?” With planners listening to citizen comments with an ear for face validity observations, holds open the opportunity for government to empirically learn from the community to see if they “got it right.” And if not, to chart out a course on how they can get it right.     

Explicit Verbal Sexual Consent Communication: Effects of Gender,Relationship Status,and Type of Sexual Behavior

Objectives: College students believe that they are supposed to be explicit and verbal in their sexual consent communication. We examined various contexts to determine when sexual consent is likely to be communicated explicitly and verbally. Method: We surveyed U.S. college students’ (n?=?707) sexual consent communication. Results: We identified contexts when explicit verbal consent cues are less likely—when the person is a woman, when the sexual relationship is casual, and when the sexual behavior is not vaginal-penile intercourse. Conclusions: If sexual consent is contextual, that means communicating consent should not ever be taken for granted.     

Variation within households in consent to link survey data to administrative records: evidence from the UK Millennium Cohort Study

This study expands our knowledge of consent in linking survey and administrative data by studying respondents’ behaviour when consenting to link their own records and when consenting to link those of their children. It develops and tests a number of hypothesised mechanisms of consent, some of which were not explored in the past. The hypotheses cover: parental pride, privacy concerns, loyalty to the survey, pre-existing relations with the agency holding the data, and interviewer effects. The study uses data from the longitudinal Millennium Cohort Study to analyse the correlates of consent in multiple domains (i.e. linkage of education, health and economic records). The findings show that respondent’s behaviour vary depending on the consent domain and on the person within the household for whom consent is sought. In particular, the cohort member’s cognitive skills and the main respondent’s privacy concerns have differential effects on consent. On the other hand, loyalty to the survey proxied by the longitudinal response history has a significant and strong impact on consent irrespective of the outcome. The findings also show that interviewers account for a large proportion of variations in consent even after controlling for the characteristics of the interviewer’s assignment area. In total, it is possible to conclude that the significant impact of some of the correlates will lead to sample bias which needs to be accounted for when working with linked survey and administrative data.     

Active parental consent in school-based research. An examination of ethical and methodological issues

To date, most school-based research has used passive parental consent. However, the Family Privacy Protection Act of 1995 aims to change these requirements. The proposed legislation requires written parental consent if minors are to be asked "sensitive" questions as part of any program or activity funded in whole or in part by the federal government. This act is representative of a growing trend toward restricting research involving minors. Whether or not this act is passed by Congress, two lines of concern are highlighted by this legislation. The first deals with ethical issues surrounding consent procedures. For instance, are parental rights compromised when active consent is not mandated? A second line of inquiry pertains to the effect of active consent procedures on response rates and sample bias. In this article, the authors discuss ethical issues surrounding passive and active consent procedures and then report response rates from two projects in which active consent procedures were implemented.     

Commodification of rural places: A narrative of social fields,rural development,and football

One of the most significant recent elements of restructuring in rural areas is the transition from an economy based on agricultural production to an economy based on the countryside as a form of commodity. In this transition process, different narratives or images of an area are produced to promote villages and other places in the countryside as commodities. Much of the literature takes it for granted that outsiders control the processes of branding rural areas, but our case study demonstrates that the producers (as well as potential consumers) of the countryside as a commodity can be insiders within a community. In this paper, we demonstrate how a local football club can take a leading role in the process of commodification of rural places in the post-modern era. Football clubs are presented as commodities to attract investors, sponsors, and expertise from private businesses. In both commodification of rural places and football, the challenge is to construct narratives or images that correspond to the pre-existing expectations of consumers, whoever they might be. Our theory-informed empirical analyses illustrate the way in which the Norwegian football club Sogndal Football has been instrumental in the restructuring of the Sogndal community.     

Stimulus package includes 42 CFR Part 2 provisions

The language in the stimulus package, as of March 26, revises 42 CFR Part 2 (confidentiality of substance use disorder patient records requiring patient consent before release), eliminating the consent provisions – allowing patients to give consent only once: “it shall be permissible for a patient's prior written consent to be given once for all such future uses or disclosures for purposes of treatment, payment, and health care operations, until such time as the patient revokes such consent in writing.”While not full alignment with the Health Insurance Portability and Accountability Act (HIPAA), it is bad news for confidentiality. Many programs probably require consent before admitting patients to treatment. The vague “health care operations” is included as a party that can get information redisclosed. If the House and the President signs off, the new law goes into effect immediately. H. Westley Clark, M.D., J.D., Dean's Executive Professor at Santa Clara University and former director of the Center for Substance Abuse Treatment at the Substance Abuse and Mental Health Services Administration said the pending NPRM on 42 CFR Part 2 from SAMHSA should be suspended, that 42 CFR Part 2 should be formally moved from SAMHSA to the Office of Civil Rights (OCR) of the Department of Health and Human Services since OCR has the function to collect data, monitor breaches, and impose penalties.” In addition, stakeholders should “ask what the new 42 CFR part 2 look like with the proposed changes which include the consent provisions, the breach notification provisions, the penalty provisions and all the other bells and whistles.” The bill was passed unanimously by the Senate March 25, and was scheduled to go to the House of Representatives for a vote March 27, after which President Trump was expected to sign it.     

Research with Children and Young People: The Issue of Parental (Proxy) Consent

This study examines the potential problems with the parental consent requirement, substantiated with examples mainly from healthcare and social research studies. This will illustrate how the parental consent requirement, instead of promoting high ethical standards, may result in some instances of children’s rights and ethical considerations being ignored or receiving cursory attention. The ‘blanket’ requirement of parental consent for all research involving children under the age of 18 years needs to be challenged as it fails to recognise children’s capacities and accord children due respect as persons in their own right. Flexible ethical guidelines should be developed that take cognisance of children’s competence in contemporary society and at the same time protects children from inappropriate research and procedures.     

Reflexive Research Ethics for Environmental Health and Justice: Academics and Movement-Building

Community-engaged research on environmental problems has reshaped researcher-participant relationships, academic-community interaction, and the role of community partners in human subjects protection and ethical oversight. We draw on our own and others' research collaborations with environmental health and justice social movement organizations to discuss the ethical concerns that emerge in community-engaged research. In this paper we introduce the concept of reflexive research ethics: ethical guidelines and decision-making principles that depend on continual reflexivity concerning the relationships between researchers and participants. Seeing ethics in this way can help scientists conduct research that simultaneously achieves a high level of professional conduct and protects the rights, well-being, and autonomy of both researchers and the multiple publics affected by research. We highlight our research with community-based organizations in Massachusetts, California, and Alaska, and discuss the potential impacts of the community or social movement on the research process and the potential impacts of research on community or social movement goals. We conclude by discussing ways in which the ethical concerns that surface in community-engaged research have led to advances in ethical research practices. This type of work raises ethical questions whose answers are broadly relevant for social movement, environmental, and public health scholars.     

Anger as a Frequent Factor in Custody Evaluation Complaints to Boards of Psychology

In order to provide the highest quality services when court-ordered to do child custody evaluations, it is important for mental health professionals, particularly psychologists who do psychological testing, to be clear about the ethical requirements associated with the child custody evaluation process. They should be impartial, thorough, and competent focusing on the best interest of the child. Mental health professionals have been accused of unethical and illegal behavior when doing such evaluations, in part, due to the anger associated with the outcome and/or the process. The ethical issues most associated with licensing board and ethics committee complaints and civil lawsuits focus on bias, informed consent, lack of symmetry, timeliness, finances, confidentiality, negligence, chemical dependency, multiple relationships, and failure to report/omissions.     

Obtaining Informed Consent When a Profession Labels Itself as Providing Treatment for Mental Illness

Abstract

This paper examines when informed consent laws mandating explanation of the risks and benefits for proposed treatments (some talk intervention) and alternative to the proposed treatments (e.g., medications) apply to the social work profession. The reasons why an explanation of alternative treatments, including explaining medications, might be part of securing informed consent are proffered. Following this, consideration of how the task of explaining alternatives might be addressed is examined. The particular example of antidepressant medications provides a context for considering how to discuss medications as a treatment alternative. The kind of information a social worker might be obligated to possess and then impart to the client in fulfilling the task of obtaining informed consent is considered.     

Characteristics of responding-, nonresponding- and refusing-parents in an adolescent lifestyle choice study.

The acquisition of a random sample is one of the many methodological problems that arise when conducting research with adolescent populations. Frequently, due to ethical considerations associated with collecting data from adolescents, active parental consent procedures are required. The current study examined characteristics of parents who consented, refused consent, or did not respond to an active consent request for their children to participate in a large-scale study of adolescent lifestyle behaviors. Results indicated nonresponding-parents were more likely to be employed than consenting-parents. Further, differences were found for a number of attitudinal variables and about the importance of adolescent research. There were significant differences between refusing-parents, and consenting- and nonresponding-parents who were similar in their attitudes toward adolescent research. The findings suggest that nonresponding-parents are characteristically more similar to consenting-parents than to refusing-parents, which supports the use of passive consent procedures as a reasonable alternative to requiring active parental consent in adolescent research.     

Using community-based research within regeneration. The role of the researcher within community-based approaches – exploring experiences within Objective 1 South Yorkshire

Much attention has been given in recent years to involving community members in research within a number of fields including community development. Indeed, there is a large amount of literature outlining what this process involves and describes the benefits and problems of doing such research across a range of contexts. There has also been some discussion of the different approaches that can be applied under the umbrella of community-based research and their relationship to the outcomes associated with both successful and positive community development. Yet very little attention has been paid to the actual experiences of these lay researchers involved in community-based research in relation to their roles. The nature of the researcher's role as work thus requires critical consideration. This article examines the role of lay researchers within four different approaches to community-based research used for the development of community action plans within the Objective 1, South Yorkshire context. This article reports upon differential roles and types of work in relation to both experiences and outcomes. The article, therefore, addresses what these different researcher roles tell us about community-based research and outlines the implications in relation to community development.     

Conceptualizing the role of consent in the definition of rape at the international criminal court: a norm transfer perspective

Over the past three decades, international criminal legal standards on sexual and gender-based violence have developed rapidly, sparking debate within feminist circles over the extent to which these developments might be relevant to domestic contexts in a process termed “norm transfer.” Indeed, non-governmental organizations and feminist scholars have called for domestic adoption of the International Criminal Court (ICC) definition of rape due to its omission of the element of the absence of consent. However, the place of consent in an international criminal definition of rape is a hotly contested topic, with disagreement as to whether rape in conflict should be considered “exceptional” or a continuation of everyday violence against women. This article provides a new lens through which to explore these questions by situating the feminist strategy of norm transfer within the complementarity-based system of the ICC. It uncovers a number of gaps within the ICC definition that raise questions not only about the status of the definition as a candidate for norm transfer but also about the robustness of the definition itself. The article concludes by considering the role of consent as an implicit element within the ICC definition and its operation as a defense.     

A comparison of methods to obtain active parental consent for an international student survey

Many school-based research efforts require active parental consent for student participation. Maximizing rates of consent form return and agreement is an important issue, because sample representativeness may be compromised when these rates are low. This article compares two methods for obtaining active parental consent: return of consent forms in the mail versus return by students to their classrooms. The methods were tested in a pilot study of 46 schools (1,058 students), with half of the schools randomly allocated to each of the alternative methods. A hierarchical nonlinear model of consent form return and agreement rates suggests that the student-delivered method is more successful at producing higher rates of consent form return and agreement to participate in the study, after controlling for school-level characteristics. The authors discuss the findings and their implications for other researchers engaged in school-based research with adolescents.     

Foster family care review by judicial-citizen panels: an evaluation

The findings of this study are mixed. In general, after one year of judicial-citizen review, there is no clear indication that this alternative to internal case review has led to more positive outcomes for children in foster care. This finding should be heartening to public child welfare agency personnel whose motivation for accountability has been called into question by proponents of external foster care review. At least when compared with a new citizen review system, the already existing internal review system measured up quite well. Although the study did not indicate a clear pattern of more positive outcomes for the study group, there is evidence of some favorable characteristics of CRPs that may show promise for the future. With additional training in developing behaviorally measurable and time-limited parental objectives, citizen panels may be able to maintain some of their initial strength in this area. Increased involvement of juvenile court judges in cases where little or no progress is made could motivate some parents to meet specified objectives and speed up the process of terminating parental rights when no progress has been demonstrated within specified time periods. The data also indicate a need for some adjustment to the process used to involve parents in case reviews. Another potentially positive outcome was highlighted during interviews with the juvenile court judges and the DFCS staff in the three study counties. Many of these respondents believed that the process had the potential for moving children out of foster care more quickly than does the internal review process. In addition to this primary goal, however, respondents were excited about the potential for heightened community awareness and education as citizens come to understand more about the plight of foster children and family conditions that can lead to placement. Interviews with panel members themselves indicated a definite belief that the community needed to accept more responsibility for children in foster care. One panel member's comment reflects the general sentiment expressed by other respondents: "These are kids we used to call 'those kids,' but now they are 'our kids'." It is hoped that the judicial-citizen review process will help to create a community environment in which needed resources can be developed both to prevent placement and to provide more support for families and children when placement occurs. This is the sentiment of the three juvenile court judges and almost all DFCS staff members who were interviewed, when they asserted that they felt the CRP process should be continued and expanded statewide.(ABSTRACT TRUNCATED AT 400 WORDS)