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As biomedicine becomes increasingly enmeshed in modern life, biomedicalization processes have implications for reproductive policy, including abortion policy. Informed consent provisions have been a prominent trend in state-level abortion lawmaking in the United States in recent years. Modeled on the practice of securing informed consent for medical procedures, informed consent provisions stipulate the information a person must receive before they can consent to an abortion. Informed consent provisions purportedly require that this information be objective, scientifically accurate, and non-judgmental. Through an analysis of informed consent provisions in Texas abortion legislation from 1993 to 2015, this chapter explores how such provisions employ medical and biomedical tropes to frame regulations that restrict access to abortion care as ostensibly protecting women’s health and safety. I find that informed consent legislation in Texas selectively borrows from medical and biomedical lexicons, cites strategic empirical evidence, and co-opts medical techniques and experts in ways that encumber abortion access.

This chapter aims to provide an overview of the ethical framework and decision-making in clinical dementia research, and to analyze and discuss the ethical challenges and issues that can arise when conducting clinical dementia research.

Informed consent is the most scrutinized and controversial aspect of clinical research ethics. In clinical dementia research, assessing decision-making capacity may be challenging as the nature and progress of each disease influences decision-making capacity in diverse ways. Persons with dementia represent a vulnerable population deserving special attention when developing, implementing, and evaluating the informed consent process. In this chapter, particular attention will be given to vulnerability categories and how these influence decision-making capacity. Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in clinical dementia research.

In addition, this chapter analyses important ethical challenges and issues in clinical dementia research. If handled thoughtfully, they would not pose insuperable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and cause harm to research participants. Ethical considerations in research involving persons with dementia primarily concern the representation of the interests of the participants with dementia and protection of their vulnerabilities and rights.

A core set of ethical questions and recommendations are drawn to aid researchers, institutional review boards and potential research participants in the process of participating in clinical dementia research.

This chapter examines the rights of those who have their photograph taken for use by non-profit organisations (such as non-governmental organisations, charities, and academic institutions) and the obligations of those producing and using these images to not abuse those rights. The chapter focusses on informed consent as the key intersection of these rights and obligations. It examines the specifics of what is meant by ‘informed consent’ and the importance of the process of it being requested and given. The argument presented suggests, rather than seeing this process as a legal, one-off contract, that it should be seen as a relationship that may evolve over time and, to a degree, attempts to establish a more equitable relationship between those who produce and publish images and those who appear in them. It is suggested that this process can play a role in addressing a number of ethical issues, including the safety of the individual being photographed and how vulnerable populations are represented visually.

When a study involves human participants, researchers need to ensure their safety and protect their identities. How do potential participants know what they are agreeing to contribute, and how and why the research is being conducted? Informed consent describes the process and agreements that answer such questions. Conventional consent protocols focused on preresearch discussions between the researcher and the potential participant, resulting in a signed document that verified the agreement. In research conducted with, on, or through social media, there are fewer opportunities for conversational explanations of formal documents. Simply posting legalistic documents is ineffective because Internet users typically do not read such materials before verifying agreement. Researchers need to understand communities, contexts, and communication styles of target participants and settings in order to provide information in familiar, user-friendly ways. Based on a review of literature about informed consent, and a study of current practices used by companies that need to verify agreements online, practical research suggestions are offered. Qualitative researchers who want to collect data through active interactions with human participants will find these examples and recommendations of use when designing their studies.

Researchers face many ethical challenges when conducting research with children. Ethical issues can be even more significant when researchers work with children from low-income urban settings in the Global South. This chapter presents reflections on research conducted with children aged 6–12 years old who live in Jakarta, Indonesia. Underpinned by the new sociology of childhood, the study was designed to gather these children’s perspectives on child-friendly public spaces in their neighbourhoods. A range of qualitative methods were used including child-led tours, drawings, observations and interviews. As part of the study, the authors developed and reflected on the use of story and storytelling to deliver the research information and obtain the children’s consent to participate. The authors’ experience demonstrates that story and storytelling supported children’s competence and engaged them in a meaningful informed consent process. This approach is especially relevant for children with low literacy skills and whose parents or caregivers may not be available to help children decide on their participation in research. The chapter concludes with recommendations for effectively approaching this ethical challenge in future social research with children from similar backgrounds.

Some researchers consider most social media communications as public, and posts from networks such as Twitter are routinely harvested and published without anonymization and without direct consent from users. In this chapter, we argue that researchers must move beyond the permissions granted by ‘legal’ accounts of the use of these new forms of data (e.g., Terms and Conditions) to a more nuanced and reflexive ethical approach that puts user expectations, safety, and privacy rights center stage. Through two projects, we present qualitative and quantitative data that illustrate social media users’ views on the use of their data by researchers. Over four in five report expecting to be asked for their consent and nine in ten expect anonymity ahead of publication of their Twitter posts. Given the unique nature of this online public environment and what we know about users’ views pertaining to informed consent, anonymity, and harm, we conclude researchers seeking to embark on social media research should conduct a risk assessment to determine likely privacy infringement and potential user harm from publishing user content.

The chapter discusses the uniqueness of qualitative research that does not allow meeting the terms of consent as they are applied in traditional, positivist research with pre-defined goals that aim to validate hypotheses.

It is proposed adopting an ethics that promotes trust-based, reflective and dynamic relations between researchers and participants, centering on caring, humanity and concern. The suggested alternative approach views consent as an ongoing process that takes place throughout the entire course of the study; responsibility for protection of participants is expected of participants too, and is not the duty of researchers alone; mutuality must take place in the form of an ongoing, continuous dialogue; it is in order to consider fair recompense for participants too, thus reducing the one-sidedness of the research interest, and the chances that participants will decide to withdraw before completion of the study.

Over the past decade, the number of people engaging with social media has grown rapidly. This means that social media platforms such as Twitter and Facebook are potentially good sources of rich, naturally occurring data. As a result, a growing number of researchers are utilizing these platforms for the collection of data on any number of topics. To date, no consistent approach to the ethics of using social media data has been provided to researchers in this sphere. This chapter presents research that has developed an ethics framework for the use of researchers working with social media data. The chapter also presents the framework itself and guidance on how to use the framework when conducting social media research. A full report can be accessed on: http://www.abdn.ac.uk/socsci/research/new-europe-centre/information-societies-projects-225.php

Research with vulnerable groups is crucial to get their input into public policy design that will directly impact on them. However, there are many methodological and ethical challenges involved in encouraging participation from groups with a wide range of intellectual, cognitive and physical capacities while ensuring that the rights and well-being of participants are protected. Rather than exploring ethical theories, this chapter is a case study describing the practical ethical considerations that were involved in designing and holding a series of focus groups with adult health and social care service users from vulnerable cohorts. It is based on a series of focus groups which the Institute of Public Health (IPH) held with specified cohorts as part of a policy development process on adult safeguarding for the Department of Health (DOH) in Ireland. The four cohorts were people with intellectual disability, cognitive impairments, significant mental health challenges and nursing home residents. This chapter does not describe the findings of the focus groups but outlines the ethical and methodological considerations that arose in designing and conducting this research, and the practical ethical safeguards employed to mitigate risk and comply with Irish and EU General Data Protection Regulation (GDPR) legislation governing health research. It outlines the ethical issues around protecting confidentiality and using incentives to encourage participation, how individuals' capacity to give informed consent was maximized, the risk-assessment and mitigation procedures used to prevent harms arising and the measures put in place to provide follow-up emotional support to participants.

Criminology and criminal justice research in Australia that involves Indigenous peoples or has an Indigenous focus currently needs to follow guidelines of the National Health and Medical Research Council National Statement on Ethical Conduct in Human Research (Updated 2018) and the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) Guidelines for Ethical Research in Australian Indigenous Studies (2012). However, neither of these documents specifically focus on research or evaluations in the criminology and criminal justice space, resulting in discipline-specific gaps. Drawing from both the Declaration on the Rights of Indigenous Peoples and Indigenous and post-colonial literature on research ethics, our chapter focuses on three core questions: (a) What does ‘free, prior and informed consent’ to participate in research mean and how should it be obtained and operationalised in criminology and criminal justice research involving Indigenous peoples and communities? (b) What does the requirement that research be ‘for the benefit of Indigenous peoples’ mean in the context of criminal justice research? and (c) How can ethical guidelines ensure that Indigenous-focussed criminological and criminal justice research and evaluation enhance and support Indigenous peoples’ empowerment and self-determination?