The certificate of confidentiality at the National Institute of Mental Health: discretionary considerations in its applicability in research on child and adolescent mental disorders

Child and adolescent researchers must balance increasingly complex sets of ethical, legal, and scientific standards when investigating child and adolescent mental disorders. Few guidelines are available. One mechanism that provides the investigator immunity from legally compelled disclosure of research records is described. However, discretion must be exercised in its use, especially with regard to abuse reporting, voluntary disclosure of abuse, and protection of research data. Examples of discretionary issues in the use of the certificate of confidentiality are provided.     

Imaging or imagining? A neuroethics challenge informed by genetics

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point--even a backbone--for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge.     

Imaging or Imagining? A Neuroethics Challenge Informed by Genetics

From a twenty-first century partnership between bioethics and neuroscience, the modern field of neuroethics is emerging, and technologies enabling functional neuroimaging with unprecedented sensitivity have brought new ethical, social and legal issues to the forefront. Some issues, akin to those surrounding modern genetics, raise critical questions regarding prediction of disease, privacy and identity. However, with new and still-evolving insights into our neurobiology and previously unquantifiable features of profoundly personal behaviors such as social attitude, value and moral agency, the difficulty of carefully and properly interpreting the relationship between brain findings and our own self-concept is unprecedented. Therefore, while the ethics of genetics provides a legitimate starting point—even a backbone—for tackling ethical issues in neuroimaging, they do not suffice. Drawing on recent neuroimaging findings and their plausible real-world applications, we argue that interpretation of neuroimaging data is a key epistemological and ethical challenge. This challenge is two-fold. First, at the scientific level, the sheer complexity of neuroscience research poses challenges for integration of knowledge and meaningful interpretation of data. Second, at the social and cultural level, we find that interpretations of imaging studies are bound by cultural and anthropological frameworks. In particular, the introduction of concepts of self and personhood in neuroimaging illustrates the interaction of interpretation levels and is a major reason why ethical reflection on genetics will only partially help settle neuroethical issues. Indeed, ethical interpretation of such findings will necessitate not only traditional bioethical input but also a wider perspective on the construction of scientific knowledge.     

ELSI priorities for brain imaging

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier.     

Ethics in violence against women research: the sensitive, the dangerous, and the overlooked

Traditional disciplinary guidelines are inadequate to address some of the ethical dilemmas that emerge when conducting research on violence against women and girls. This article is organized according to the ethical principles of respect for persons, privacy and confidentiality, justice, beneficence, and nonmaleficence. In the article, I describe dilemmas involved in cross-cultural research, research on children, informed consent, voluntariness, coercion, deception, safety, mandated reporting, and dissemination. In the article, I include examples from qualitative and quantitative studies in many nations. I also offer suggestions for researchers and institutional review boards.     

ELSI Priorities for Brain Imaging

As one of the most compelling technologies for imaging the brain, functional MRI (fMRI) produces measurements and persuasive pictures of research subjects making cognitive judgments and even reasoning through difficult moral decisions. Even after centuries of studying the link between brain and behavior, this capability presents a number of novel significant questions. For example, what are the implications of biologizing human experience? How might neuroimaging disrupt the mysteries of human nature, spirituality, and personal identity? Rather than waiting for an ethical agenda to emerge from some unpredictable combination of the concerns of ethicists and researchers, the attention of journalists, or after controversy is sparked by research that cannot be retracted, we queried key figures in bioethics and the humanities, neuroscience, media, industry, and patient advocacy in focus groups and interviews. We identified specific ethical, legal and social issues (ELSI) that highlight researcher obligations and the nonclinical impact of the technology at this new frontier.     

Ethical issues surrounding human participants research using the Internet

The Internet appears to offer psychologists doing research unrestricted access to infinite amounts and types of data. However, the ethical issues surrounding the use of data and data collection methods are challenging research review boards at many institutions. This article illuminates some of the obstacles facing researchers who wish to take advantage of the Internet's flexibility. The applications of the APA ethical codes for conducting research on human participants on the Internet are reviewed. The principle of beneficence, as well as privacy and confidentiality, informed consent, deception, and avoiding harm are all illustrated through the use of a hypothetical online study.     

Ethical and legal issues in conducting research involving elderly subjects

Older people are increasingly the focus of biomedical and behavioral research not only because the elderly constitute the fastest growing segment of our population but because there is a societal concern to improve the elderly's quality of life. The profound need to advance that research carries with it an equally profound obligation to protect the rights and welfare of elderly research subjects, and thus raises difficult ethical and legal issues. Against a background of foundational principles for the protection of human subjects, we discuss whether older subjects should be treated as a special class, the ethical and legal issues over informed consent, capacities for consent, and special problems related to cognitive impairment. We discuss surrogate/proxy consent procedures in research, recruitment of elderly subjects, conflicts of interest, special problems regarding institutional research, and risk/benefit analyses. We offer recommendations and practical guidelines for conducting current and future research involving elderly participants.     

Internet research: an opportunity to revisit classic ethical problems in behavioral research

The Internet offers many new opportunities for behavioral researchers to conduct quantitative and qualitative research. Although the ethical guidelines of the American Psychological Association generalize, in part, to research conducted through the Internet, several matters related to Internet research require further analysis. This article reviews several fundamental ethical issues related to Internet research, namely the preservation of privacy, the issuance of informed consent, the use of deception and false feedback, and research methods. In essence, the Internet offers unique challenges to behavioral researchers. Among these are the need to better define the distinction between private and public behavior performed through the Internet, ensure mechanisms for obtaining valid informed consent from participants and performing debriefing exercises, and verify the validity of data collected through the Internet.     

Ethical and Regulatory Considerations for Using Social Media Platforms to Locate and Track Research Participants

As social media becomes increasingly popular, human subjects researchers are able to use these platforms to locate, track, and communicate with study participants, thereby increasing participant retention and the generalizability and validity of research. The use of social media; however, raises novel ethical and regulatory issues that have received limited attention in the literature and federal regulations. We review research ethics and regulations and outline the implications for maintaining participant privacy, respecting participant autonomy, and promoting researcher transparency when using social media to locate and track participants. We offer a rubric that can be used in future studies to determine ethical and regulation-consistent use of social media platforms and illustrate the rubric using our study team’s experience with Facebook. We also offer recommendations for both researchers and institutional review boards that emphasize the importance of well-described procedures for social media use as part of informed consent.     

Confidentiality issues in psychological research

There has been increased attention in recent years to the importance of individual privacy and professional confidentiality both in Australia and overseas. At the same time, psychologists' growing research interests in areas such as AIDS, child sexual abuse, and domestic violence have led to new ethical dilemmas over the contract of confidentiality between researchers and their research participants. The present paper discusses a number of issues regarding the ethics of confidentiality in psychological research. Following Bok (1989), the issues are highlighted within the context of four ethical principles that underlie researchers' obligations to preserve confidentiality. These principles are derived from considerations of privacy, loyalty, the pledge of silence, and professional codes of ethical standards. Each of these principles is illustrated with examples taken from recent research. We devote special attention to instances that appear to provide a clash between moral principles.     

Piercing the Veil: Ethical Issues in Ethnographic Research

It is not unusual for researchers in ethnography (and sometimes Institutional Review Boards) to assume that research of “public” behavior is morally unproblematic. I examine an historical case of ethnographic research and the sustained moral outrage to the research expressed by the subjects of that research. I suggest that the moral outrage was legitimate and articulate some of the ethical issues underlying that outrage. I argue that morally problematic Ethnographic research of public behavior can derive from research practice that includes a tendency to collapse the distinction between harm and moral wrong, a failure to take account of recent work on ethical issues in privacy; failure to appreciate the deception involved in ethnographers’ failure to reveal their role as researchers to subjects and finally a failure to appropriately weigh the moral significance of issues of invasion of privacy and inflicted insight in both the research process and subsequent publication of research.

Collecting Informed Consent with Juvenile Justice Populations: Issues and Implications for Research

Researchers must provide participants with opportunities to make informed decisions about whether to participate in research studies. Investigators conducting research with youth in the juvenile justice system face unique ethical, legal, and practical challenges to obtaining informed consent. Juvenile justice researchers must navigate multiple legal and ethical standards for collecting informed consent, take into account youths’ dual vulnerabilities as children and prisoners, and overcome practical limitations to obtaining parental/guardian permission. Given the challenges and complexity of obtaining standard informed consent of youth in juvenile justice facilities, this paper provides suggestions for overcoming obstacles to recruiting these youth for research participation. It offers guidance for fostering the enrollment of juvenile justice youth in research studies using procedures that comply with ethical and legal standards for research with this dually vulnerable population. Copyright © 2013 John Wiley & Sons, Ltd.     

Ethical issues in a study of Internet use: uncertainty, responsibility, and the spirit of research relationships

In this article we explore ethical issues arising in a study of home Internet use by low-income families. We consider questions of our responsibility as educational researchers and discuss the ethical implications of some unanticipated consequences of our study. We illustrate ways in which the principles of research ethics for use of human subjects can be ambiguous and possibly inadequate for anticipating potential harm in educational research. In this exploratory research of personal communication technologies, participants experienced changes that were personal and relational. These unanticipated changes in their way of being complicated our research relationships, testing the boundaries of our committment to the principle of trustworthiness and forcing us to reevaluate our responsibilities.     

Ethical and legal risks associated with archival research

Mental health facilities and practitioners commonly permit resarchers to have direct access to patients' records for the purposes of archival research without the informed consent of patient-participants. Typically these researchers have access to all information in such records as long as they agree to maintain confidentiality and remove any identifying data from subsequent research reports. Changes in the American Psychological Association's Ethical Principles (American Psychological Association, 1992) raise ethical and legal issues that require consideration by practitioners, researchers, and facility Institutional Review Boards. This article addresses these issues and provides recommendations for changes in ethical standards as well as alternative avenues for conducting research using archival mental health records.     

Methodological, ethical, and legal considerations in drug court research

Since their inception in the late 1980s, drug courts have become the most prevalent specialty court in the United States. A large body of outcome research conducted over the past two decades has demonstrated that drug courts effectively reduce drug use and criminal recidivism, which has led to the rapid proliferation of these courts. Importantly, drug court research has flourished despite the many challenges faced by researchers when working with a vulnerable population of justice-involved substance users. In this article, we highlight the most common methodological, ethical, and legal challenges encountered in drug court research, and discuss ways in which researchers can overcome these challenges to conduct high-quality research. Drug court research exemplifies how rigorous empirical investigation can be accomplished in the criminal justice system, and it can serve as a useful model for researchers working in other parts of the judicial system.     

Biomedical research and mining of the poor: The need for their exclusion

Almost all ethical guidelines and legislative policies concerning biomedical research involving human subjects contain provisions about relevance of research for the participating populations, informed consent, adequate care for research induced injuries and several other safeguards but the poor continue to suffer. Globalization has further aggravated poor people’s vulnerability by exposing them to international markets. Since the developing countries are abode of higher population of the poor they have become the unholy mines of this human ore for researchers. In this paper I examine various dimensions of poverty and analyze the international ethical responses in the area of biomedical research involving human subjects in order to determine their adequacy to protect the poor against exploitation and misuse and conclude that in view of the poor’s inherent and extreme vulnerability and the failure of ethical pronouncements to protect them from misuse and exploitation, they should be excluded from being enrolled as research subjects This paper was presented at the 6th International Bioethics Conference on the subject of ‘The Responsible Conduct of Basic and Clinical Research’, held in Warsaw, Poland, 3–4 June 2005.     

Biobanks: Importance,Implications and Opportunities for Genetic Counselors

Biobanks are collections of human biological tissue specimens and related health data. Biobank research hopes to provide novel insights into the genetic component of disease, ultimately leading to a more personalized approach to healthcare. However, biobanks have sparked debate due to the ethical, legal, and social implications surrounding utilization of population samples and data. These controversies include issues of consent, privacy and confidentiality, return of results and data-sharing. This paper provides an overview of the different types and scope of biobanks and an examination of the most pertinent ethical, legal and social considerations surrounding such research, as well as how some of these concerns are being addressed. The paper finishes with a discussion of the relevance of biobanks to the genetic counseling field and concludes that genetic counselors are in a position to make a unique, educated and practical contribution to the ongoing dialogue and direction of biobank research.     

Ethics in Publication

Summary

This article highlights ethical issues in publication. It addresses the provenance of ideas, problems with joint authorship, plagiarism, and the practice of duplicate submission of material for publication. Confidentiality and privacy matters, and the protection of human subjects in publication of research and clinical case studies are also discussed. The article further examines biases in literature reviews, and in the biased selection of one's best results for publication, intentional misinterpretation of data and the slanting of discussion, summary, and conclusions. Finally, the article deals with ethical problems that can arise in the publication of sponsored research, and the ethical responsibilities of editors and readers.     

The Ethics of Conducting Community-Engaged Homelessness Research

This paper focuses on some of the ethical issues which may arise when conducting research in the context of homelessness. These issues are considered from the viewpoints of researchers, research coordinators and interviewers, drawing from their extensive real world experience. In addition to negotiating the complex context of homelessness, community-based homelessness researchers need to address a number of ethical issues in research conception, design, implementation and dissemination. Although these issues are commonly considered in community-engaged research, research with people who are homeless may raise exceptional challenges. Such challenges include determining the nature of informed consent; protecting research participants and researchers, and determining appropriate compensation for participation. Understanding the context of homelessness to conduct ethical research will require sharing information and joint decision-making, processes that must include members of communities within which the research participants live. Furthermore, researchers should be sensitive to the changing context of homelessness, and vigilant for new ethical challenges.