Active SETI and the Problem of Research Ethics

This article argues that research involving active SETI, or sending messages toward possible extraterrestrial intelligence (METI), is not ethically justifiable. As a way of working some of the ethical problems associated with METI, I approach the sending of a message from the perspective that it represents a research endeavor involving sentient beings and therefore, should undergo review by a university institutional review board (IRB). As such, METI should be expected to meet several criteria expected by IRBs as being necessary components of ethically justifiable research. By considering issues of proportionality, justice, informed consent, the likely success of obtaining desired results, and necessity and considering risks and benefits to research subjects, as well as the mandate to do no harm, it is evident that METI does not meet the requirements for ethical research on human subjects and, thus, should not be considered ethical when it comes to nonhuman sentient beings.     

Facilitating Informed Consent: A Multicultural Perspective

Respect for the dignity and autonomy of patients has long been a fundamental principle of ethical decision making. As a practical matter, a primary way of maintaining this ethical standard is by obtaining an individual’s informed consent prior to intervening or collecting data. By giving individuals clear information about alternative treatments and potential risks and benefits, the practitioner tries to ensure that the patient can make an informed choice. However, there are cases in which those seeking informed consent have very different values and belief systems from those whose consent is being sought. In this article we explore such discrepancies using informed consent with Navajo clients as an example, illustrate potential challenges with case examples, and propose ways in which ethical dilemmas may be successfully navigated.     

Ethical problems in research on risky behaviors and risky populations

The articles by Brooks-Gunn, Fisher, Hoagwood, Liss and Scott-Jones (all in this issue) present a panoply of real-world ethical issues in conducting scientific research on risky behaviors of children, adolescents, and their parents, particularly those from vulnerable populations. The universal, ethical principles of beneficence, justice, and respect for others are always applicable, but they do not resolve issues of child assent, parental consent, legal reporting requirements for illegal behaviors, and the special problems of studying risky behaviors in risky populations. Taken as a group, the articles raise some of the most interesting ethical problems that arise in developmental research. My discussion elaborates some issues and fails to resolve others. I hold the view that both science and ethics can be served by thoughtfully designed and implemented research on important social issues, but that the studies themselves cannot simultaneously solve the many societal problems of participants and be scientifically credible.     

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.     

Évolutions législatives et enjeux éthiques liés à la prise en charge des enfants ayant un trouble de la différenciation sexuelle (DSD)

The ethical dilemma concerning the care of children with a disorder of sex development opposes patients who have benefited from undeniable medical and surgical advances over the past 30 years and patients who have suffered from initial carek, experienced as “torture” or “genital mutilation”. The latter, grouped into advocacy organization (including the International Intersex Organization), recommend that genital operation of children must be avoided until they can give their prior consent, in the name of the fundamental right to self-determination and physical integrity. This “free choice” left to the child would not take into account the opinion of the parents or that of the medical team, nor any psychological, social and societal consequences, nor the risks of late surgery. Recent legislative developments are exposed. The interest of legislating on these delicate situations affecting the most intimate is questioned, especially as they are of great complexity because of the heterogeneity of genetic causes and family situations. Medico-surgical Societies, in connection with patient associations denounce this media hold by “Intersex” activists, who are not representative of the patients having been managed more recently. They advocate to continue to understand these situations on a case-by-case basis, leaving the choice to the parents to allow the child to grow up in a gendered body.     

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.     

Forging the Link Between Multicultural Competence and Ethical Counseling Practice: A Historical Perspective

Recognition of multicultural competence as an essential component of ethical counseling practice is a growing trend. This article presents a historical perspective of salient events that have contributed to forging a link between multicultural competence and ethical behavior. Multicultural counseling is traced from its beginnings to its emergence at a position of prominence in the profession, along with the development of ethical guidelines over time. This time line depicts the infusion of multicultural considerations into ethical standards and provides a perspective for examining the current status of multicultural competence as an ethical mandate. Implications for the counseling profession are offered.     

Response to Lazarus's " How Certain Boundaries and Ethics Diminish Therapeutic Effectiveness"

This article presents the case of an HIV-positive client who reported having sexual relations with an unknowing partner. The issue raised is whether the therapist was required to warn the unknowing partner, similar to the Tarasoff mandate that is imposed on therapists. The case is analyzed from an ethical framework similar to that presented by Beauchamp and Childress (1994). Two opinions are presented, each leading to different conclusions about whether the therapist should inform the unknowing partner. It is concluded that although such analysis is valuable in aiding the therapist in his or her decision-making process, no clear professional standard for the management of the problem is evident.     

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.     

Divergent ethical perspectives on the duty-to-warn principle with HIV patients

This article presents the case of an HIV-positive client who reported having sexual relations with an unknowing partner. The issue raised is whether the therapist was required to warn the unknowing partner, similar to the Tarasoff mandate that is imposed on therapists. The case is analyzed from an ethical framework similar to that presented by Beauchamp and Childress (1994). Two opinions are presented, each leading to different conclusions about whether the therapist should inform the unknowing partner. It is concluded that although such analysis is valuable in aiding the therapist in his or her decision-making process, no clear professional standard for the management of the problem is evident.     

The Balancing Act—Ethical Issues in Parent Training Research: Confidentiality,Harm Reduction,and Methodology

Attention and disruptive behavior disorders present considerable challenges for children and their parents. These challenges have led to the development of parenting programs; however, there is a paucity of literature that discusses the ethical dilemmas parent training researchers face. This article reviews ethical principles and professional standards relevant to parent training research and provides case material to illustrate the challenge of balancing ethical adherence and empirical rigor using three ethical issues that commonly arise in parent training research. In particular, this article focuses on ethical issues surrounding confidentiality in a group setting, use of control groups, and limiting changes in medication/treatment status outside of the treatment protocol.     

Decoupling Marriage and Parenting

This article argues for separating the institutions of marriage and parenting, conceptually and legally. Marriage is neither necessary nor adequate for fostering cooperative and stable co‐parenting. Because promoting marriage fails to protect all children, the state should develop a more suitable formal mechanism whereby co‐parents can commit to cooperate in good faith in order to best serve the interests of their children. Like civil marriage, many of the terms of these contracts are aspirational and not enforceable, though they can guide arrangements for custody and financial support. Co‐parenting agreements need not be limited to two parents, nor need they be limited to legal parents, but can include de facto parents, such as stepparents, foster parents, and other support parents. One important aim of these agreements is to recognise and support the valuable work that married or unmarried co‐parents perform, and to protect the parental rights of caregivers in different kinds of situations.     

Ethical Implications of User Perceptions of Wearable Devices

Health Wearable Devices enhance the quality of life, promote positive lifestyle changes and save time and money in medical appointments. However, Wearable Devices store large amounts of personal information that is accessed by third parties without user consent. This creates ethical issues regarding privacy, security and informed consent. This paper aims to demonstrate users’ ethical perceptions of the use of Wearable Devices in the health sector. The impact of ethics is determined by an online survey which was conducted from patients and users with random female and male division. Results from this survey demonstrate that Wearable Device users are highly concerned regarding privacy issues and consider informed consent as “very important” when sharing information with third parties. However, users do not appear to relate privacy issues with informed consent. Additionally, users expressed the need for having shorter privacy policies that are easier to read, a more understandable informed consent form that involves regulatory authorities and there should be legal consequences the violation or misuse of health information provided to Wearable Devices. The survey results present an ethical framework that will enhance the ethical development of Wearable Technology.     

Children's capacity to agree to psychological research: knowledge of risks and benefits and voluntariness

A series of studies investigated the capacity of children between the ages of 7 and 12 to give free and informed consent to participation in psychological research. Children were reasonably accurate in describing the purpose of studies, but many did not understand the possible benefits or especially the possible risks of participating. In several studies children's consent was not affected by the knowledge that their parents had given their permission or by the parents saying that they would not be upset if the children refused. In contrast, other studies found that children were much more likely to stop their participation if the experimenter said explicitly that she would not be upset if they stopped. We suggest that experimenters should pay more attention to describing the possible risks and benefits of participation in research, and that they should also make it clearer to children that they are free to stop once they have begun.     

Learning for oneself: A Confucian‐inspired case for moral formation in ethics pedagogy

This article explores the disconnection between ethical theory and ethical practice in ethics courses at secular U.S. colleges and universities. In such contexts academic ethics focuses almost exclusively on “ethical reasoning” and leaves the business of practical moral formation of students in the realm of “student life.” I argue this disconnection is inevitable given the dominant understanding that moral formation must be guided by a consistent ethical theory, and must eventuate in certain prosocial behaviors, while norms of pluralism and free inquiry mandate that academic courses not attempt to dictate certain views or behaviors as normative. Drawing on the Confucian model of moral cultivation expressed by the early Chinese figure Mengzi, I argue for a different understanding of moral formation that focuses on open‐endedness, self‐direction, and the acquisition of skills in directing attention and will. This approach avoids the most serious challenges to practical moral formation in secular contexts, and I suggest some broadly applicable principles for implementing these ideas in ethics courses.     

When clinical care is like research: the need for review and consent

The prevailing “segregated model” for understanding clinical research sharply separates it from clinical care and subjects it to extensive regulations and guidelines. This approach is based on the fact that clinical research relies on procedures and methods—research biopsies, blinding, randomization, fixed treatment protocols, placebos—that pose risks and burdens to participants in order to collect data that might benefit all patients. Reliance on these methods raises the potential for exploitation and unfairness, and thus points to the need for independent ethical review and more extensive informed consent. In contrast, it is widely assumed that clinical care does not raise these ethical concerns because it is designed to promote the best interests of individual patients. The segregation of clinical research from clinical care has been largely effective at protecting research participants. At the same time, this approach ignores the fact that several aspects of standard clinical care, such as clinician training and scheduling, also pose some risks and burdens to present patients for the benefit of all patients. We argue that recently proposed learning health care systems offer a way to address this concern, and better protect patients, by developing integrated review and consent procedures. Specifically, current approaches base the need for independent ethical review and more extensive informed consent on whether an activity is categorized as clinical research or clinical care. An ethically sounder approach, which could be incorporated into learning health care systems, would be to base the need for independent ethical review and more extensive informed consent on the extent to which an activity poses risks to present patients for the benefit of all patients.     

Family characteristics of children who self-select into a prevention program for children of alcoholics

Evaluated the efficacy of a self-selection recruitment process designed to attract fourth-, fifth-, and sixth-grade children into a school-based prevention program for children of alcoholics. Participants were 296 families comprising one child and either one or both parents. Family members' self- and collateral reports were used to assess parental problem drinking, family characteristics, and individual pathology. Analyses revealed that the recruitment process was not effective in recruiting children of alcohol-abusing parents. Furthermore, families in which children received parental consent to participate in the prevention program were indistinguishable from families whose children either showed interest without obtaining consent or showed no interest at all. Implications for recruitment strategies for future prevention programs for children of alcoholics are discussed.     

Intervention Research with Youths at Elevated Risk for Suicide: Meeting the Ethical and Regulatory Challenges of Informed Consent and Assent

Intervention research with youths at elevated risk for suicidal behavior and suicide—a vulnerable and high risk population—presents investigators with numerous ethical challenges. This report specifically addresses those challenges involving the informed consent and assent process with parents/guardians and youths. The challenges are delineated in the context of pertinent laws and regulatory requirements, and guidelines are suggested for their practical resolution. These are illustrated with case examples from NIMH‐funded intervention trials. Through the sharing of such methodological information, intervention researchers can support each other in conducting ethical research in a manner that does not unduly compromise scientific rigor.     

Legal and Ethical Considerations in Allowing Parental Exemptions From Newborn Critical Congenital Heart Disease (CCHD) Screening

Critical congenital heart disease (CCHD) screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel (RUSP) in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include the treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand.     

Ethical aspects of research into the etiology of autism

Advances in understanding autism and other developmental neuropsychiatric disorders will come from an integration of various research strategies including phenomenologic, functional neuroimaging, and pharmacologic methods, as well as epidemiologic approaches aimed at identifying genetic and environmental risk factors. The highly heritable nature of autism makes it scientifically valuable to involve parents and siblings as research participants. However, many studies on autism pose ethical challenges because they do not offer the prospect of direct benefit to subjects. In this article, we present an in-depth ethical analysis of current nontherapeutic research strategies that are common in autism research. The ethical analysis applies a proposed ethical framework for evaluating clinical research focusing on seven ethical requirements: (1) social or scientific value, (2) scientific validity, (3) fair subject selection, (4) favorable risk-benefit ratio, (5) independent review, (6) informed consent, and (7) respect for potential and enrolled research participants.