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date: 28 June 2022

Ethics in Researchfree

Ethics in Researchfree

  • Jeane W. AnastasJeane W. AnastasNew York University

Summary

Social work researchers hold themselves to ethical standards for social science and biomedical research involving human beings, which are compatible with social work ethics. This article describes (a) the general ethical principles guiding research involving human subjects; (b) mechanisms for the ethical review of studies involving human beings; (c) ethical issues in research on vulnerable populations, such as children and adolescents, prisoners, indigenous people, recipients of care, and other socially marginalized groups; and (d) plagiarism, authorship, and conflict of interest. Current topics in the responsible conduct of research include changes in the federal guidelines for research involving human subjects, research using the Internet including Big Data research, participatory action and community-based research, and decolonizing research methodologies.

Subjects

  • Ethics and Values
  • Research and Evidence-Based Practice

Updated in this version

Bibliography and various sections updated to reflect recent resaerch.

Introduction

As research activity in social work has increased, so has attention to ethics in research. Ethical standards and practices in research guide the relationship between researcher(s) and research participant(s); guide relationships among researchers and scholars; guide how researchers relate to the organizations and communities in which their studies are conducted; and safeguard the integrity of the sciences. Vulnerable groups in the United States—people of color, women, prisoners, and people with disabilities—have in the past been harmed by biomedical and social science research. The responsible conduct of scholarship and research (RCSR; Delva & Howard, 2012) considers research and scholarship on many levels—ethical norms and standards, individual research participants, researchers, groups and communities studied, and science and scholarship as a whole.

Current standards for RCSR trace their origins to the 1947 Code of Nuremberg that emerged from international trials addressing war crimes committed by the Nazi regime in the mid-20th century, including crimes carried out in the name of research (Israel & Hay, 2006; Steneck, 2007). The World Medical Association’s Declaration of Helsinki followed in 1964. Based on these codes and in part in reaction to the infamous Tuskegee Experiment (Jones, 1993), the Report of the National Commission on the Protection of Human Subjects of Biomedical and Behavioral Research (1979), known as the Belmont Report, set forth ethical standards and regulatory mechanisms to be used in all government-funded research and research settings in the United States—standards that continue to guide the design and conduct of research studies in medicine, the social sciences, and the helping professions. The Belmont Report gave rise to the “Common Rule” that guides all federally funded research and other research in settings receiving federal funding for research (see Links to Electronic Resources). The Common Rule has been in effect since 1981; it was revised in 2017, with revisions fully implemented in January 2020. The International Ethical Guidelines for Biomedical Research Involving Human Beings, called CIOMS after its authoring organization, The Council for International Organizations of Medical Sciences, were adopted in 1982 and are regularly updated (CIOMS, 2016).

Social work research must reflect the professional and ethical aims of all social work activities (Antle & Regehr, 2003; Barsky, 2010; Nichols-Casebolt, 2012). Social workers have ethical responsibilities to clients and others with whom they work, including research participants; to the practice settings and other organizations in which they function; to colleagues and to the profession itself; and to the broader society—commitments that all must be reflected in the conduct of research.

Three Basic Principles: Beneficence, Justice, and Respect

Because no specific code of conduct can ever address all possible situations, one must understand the principles that underlie specific standards of practice (Butler, 2002; Israel & Hay, 2006; Sieber, 1992; Steneck, 2007). Codes of ethical conduct in research are based on three major principles: beneficence, justice, and respect. While these principles are widely accepted, risks and benefits are not always easy to reconcile, and differences in judgment about the risks and benefits of a study commonly arise.

Beneficence

Beneficence means that no undue harm shall be done to research participants and that some demonstrable benefit must possibly derive from any proposed research, if not to the research participants themselves, then at least to others like them in future. Adherence to this principle means that any possible risks to research participants must be anticipated and steps taken to minimize them. This also means that research must be methodologically sound so that any findings from it will have scientific credibility. Conflicts between researchers and IRB committees can arise based on differences of opinion about what constitutes sound research, especially when it comes to qualitative research and community-based participatory studies.

Non-malfeasance, or the injunction to do no harm, is subsumed under the principle of beneficence. In some national and organizational codes, this fourth principle, also traced to the Nuremberg Code, is separately mentioned. Although there are other examples of misconduct in medical and social science research (Sieber & Tolich, 2012), the Tuskegee experiment, which ended in 1972, is the most widely known example of malfeasance in medical research in the United States (Jones, 1993). In this study, poor and mostly illiterate African American sharecroppers with syphilis were studied without consent, without information about the true nature of their disease, and without effective treatment even when it became available—practices that are no longer permissible in treatment research.

Justice

Justice in research focuses on the fair distribution of burden and benefit” (Antle & Regehr, 2003, p. 138), meaning that all involved—those who are studied and those who do the studying—are treated with fairness, which also applies to traditionally understudied groups and communities. The most recent Council for International Organizations of Medical Sciences (CIOMS) guidelines address this issue as it relates to biomedical research in disadvantaged or low resource populations and communities:

the sponsor, the researcher and the relevant public health authority must ensure that the research is responsive to the health needs and priorities of the population or community in which it is carried out . . . and to make available any intervention or product developed, or knowledge generated, as soon as possible for the benefit of that population or community in which the research is carried out.

(CIOMS, 2016, p. 3).

In addition, standards of the RCRS explicitly include fairness in authorship of published studies and the condemnation of plagiarism (Delva & Howard, 2012).

It has been argued that, for social work, justice also means that research activities and findings should promote social justice and equity in society (Antle & Regehr, 2003) and empower research participants. Justice also drives the requirement that federally funded researchers may not exclude participants of because of gender or any racial or ethnic group without justification. This measure seeks to correct past practice in which women and people of color were routinely excluded from medical and other studies, leading to a systematic lack of data on their health and wellbeing and on treatments that do and do not work for them.

Respect

Respect means that the autonomy, privacy, and self-determination of those who participate in research must be safeguarded. Anyone who is part of a study must consent to do so voluntarily and after being fully informed of what will be required of them, including any risks they might incur during the conduct of the study or from the dissemination of its findings. One change in the 2017 Common Rule requires making consent forms more understandable to those signing them. Those conducting the consent process must not have undue influence over a participant’s decision about participation, such as being a service provider or someone with authority over some aspect of a person’s life. This principle also drives measures taken to safeguard research data once collected. Ensuring privacy extends to the collection, storage, and sharing of research data.

Research Governance: Institutional Review Boards

In the United States, the 1979 Belmont Report began a system of overseeing biomedical and behavioral research with humans: the use of Institutional Review Boards (IRBs) at all institutions and organizations that receive any form of government financial support (Grigsby & Roof, 1993; Shore & West, 2005). Similar regulatory mechanisms now exist in many other nations as well (Israel & Hay, 2006). Any social worker who conducts human subjects research, which means any study with people that will produce generalizable knowledge though presentations or publication, must apply to their IRB for ethical review. What constitutes a “human subject” in research, what is considered a “no risk” or “minimal risk” study, and what is acceptable training in research ethics are all spelled out in federal regulations, guidelines for IRBs, and the specific policies of each individual IRB. Who should and must serve on IRB review panels is also specified in the CIOMS standards and elsewhere. Anyone doing federally funded research as well as those doing any research with human subjects must document that they have been trained in the ethical conduct of research. On-line training is available to researchers, resulting in a certification that lasts 5 years.

Practitioners often question the ethics of clinical research designs that withhold or delay (lagged) promising interventions (randomized control trials or RCTs), but these risks can be minimized (Noble, Gelfand, & DeRubeis, 2005). The use of treatment as usual (TAU) groups has generally replaced placebo or no treatment conditions as the control groups in RCTs. In addition, the 2017 revision to the Common Rule now requires that clinically relevant research findings be shared with research participants.

Even when the risks of participation in a study are minimal, as in most social work research, studies must be conducted in such a way as to minimize risks. However, no level of risk is acceptable unless there is a potential for a study to advance knowledge based on the scientific soundness of its methodology. There have been specific concerns about how fairly IRBs may view qualitative, oral history, community-based, or participatory action studies, since IRBs often appear to be oriented to the value of the experimental and quantitative methods used in biomedical studies (CSWE, 2007; Lincoln, 2005). There are different levels of IRB oversight of research studies depending on the level of risk involved, but IRB application still must be made for all. Low risk studies can be declared exempt from review or qualified for expedited review. There has been some controversy over the functioning of IRBs (Dunn, 2013; Dyke & Allen, 2013; van den Hoonaard, 2013). For low risk studies, the 2017 changes to the Common Rule have reduced the oversight and paperwork requirements on both researchers and IRBs.

An issue that has been discussed since the original Belmont Report is the boundary between practice, especially the evaluation of practice and programs, and research (Grigsby & Roof, 1993; Holosko, Thyer, & Danner, 2009; Shore & West, 2005). Often it is the intent to publish or present research findings (suggesting that generalizable knowledge from a study and information about research participants, who may be service users, will be shared with people not involved in their care) that differentiates research from practice evaluation and triggers IRB review. International standards and procedures also vary (International Compilation of Human Research Standards).

Social Work Ethics on Research and Scholarship

The National Association of Social Workers (NASW) Code of Ethics (NASW, 2017) specifically addresses research ethics in Section 5.02. However, principles relevant to research ethics infuse the document, such as confidentiality, informed consent, and respect for fellow professionals and people social workers work with. These guidelines are necessary but not sufficient to ensure that research is conducted responsibly, and social work researchers, like others, commonly encounter ethical dilemmas in their work (Apgar & Congress, 2005b). As Butler (2002) stated, “At all stages of the research process, from inception, resourcing, design, investigation, and dissemination, social work . . . researchers have a duty to maintain an active, personal and disciplinary ethical awareness and to take practical and moral responsibility for their work” (p. 245). The Council on Social Work Education has also developed a national Statement on Research Integrity in Social Work (CSWE, 2007).

Minimizing Risks to Research Participants

Many of the ethical dilemmas that occur in research stem from the power differential between researchers and research participants who are the “objects” of the research. Involvement in research studies is based in part on the participants’ views of the research enterprise itself as benign (or not), which can be influenced by the history that a group or community has had with biomedical or social research in the past (Barata, Gucciardi, Ahmad, & Stewart, 2006; Fisher et al, 2002; Hugman, Pittaway, & Batolomei, 2011; Martin & Meezan, 2009; Schinke, Enosse, Peletier, & Lightfoot, 2010; Smith, 2012). Cultural competence must therefore infuse all parts of the research process (Oliver, 2003). Enhancing benefits to participants is also important (Bay Cheng, 2009).

Informed consent: There are two vital dimensions to informed consent: that research participation is voluntary and that consent is given in full knowledge about the nature of the study and of what will be required of study participants. Models of consent forms can be obtained from individual IRBs and from the website of the federal Office for Human Research Protection (OHRP) (see Links to Digital Materials). The nature, probability, and likely severity of any risks of research participation must be described in a consent form. However, initial consent to participate leaves participants free not to answer specific questions or take part in specific procedures and to withdraw their consent at any point in the conduct of the study—rights that must also be made clear.

Social work research can involve service users, and assurance must be given to them that declining to participate in or withdrawing from a study will not compromise the services or care they are getting in any way. Usually it is someone other than a professional involved in their care who must request research consent so that the service user will feel more free to decline. Careful attention to any effects of the power differentials between researcher and potential study participants conveys a respect that can actually enhance the data that is obtained (Sieber, 1992).

In addition, the practice of offering research participants some compensation for the time and effort they contribute to a study is common, but such rewards must not constitute an undue inducement to volunteer (Ripley, Macrina, Markowitz, & Gennings, 2010). Some believe that a cash gift to drug-using study participants, for example, may be riskier to their well-being than a gift or a gift certificate, although Festinger et al. (2005) did not find this to be true. An emerging practice in participant compensation is offering a lottery award to participants, but there is debate about its ethical use (Brown, Schonfeld, & Gordon, 2006).

Consent forms and the opportunity to discuss research participation must take into account the language of the participant and their abilities (for example, any vision problems affecting the reading of forms, level of literacy). Hence one area of concern involves how much information to convey about a study in the consent process. Perhaps to avoid litigation, the tendency over time has been to give ever more detailed information, but this trend can result in long and detailed consent documents that are hard for participants to read and understand. Because peoples’ motivations to enroll or not enroll in a study are complex (Stone, 2004), how much to say in a consent form as well as where and how to say it for the most effective communication is being studied and debated (Boothroyd & Best, 2003; Fisher et al., 2002; Lynöe & Hoeyer, 2005). One new requirement in the 2017 Common Rule is that the purpose of the research be made clear at the beginning of the consent form in terms that participants can understand but the template for consent forms remains long.

Confidentiality. Social workers usually know how to protect the confidentiality of client information and therefore understand the need for secure storage of research data. Identifiable data on research participants, including signed consent forms and lists linking names to research codes, must be securely stored separately from the research data itself, which is identified only by a code number or pseudonym. Data stored electronically must also be secure—that is, password-protected and preferably encoded. When and how data will be destroyed must also be specified. Federally funded research requires that data be made available to other scholars via research repositories. De-identification of such data is therefore essential.

Although laws vary from state to state, the confidentiality of data collected by social workers for research purposes is less well protected than clinical records. In certain sensitive areeas, such as the mandated reporting of child or elder abuse, there are clear limits to the confidentiality that a social work researcher can offer, limits that must be made clear to research participants in the consent form. If data on illegal activities, drug use, or other sensitive information is being collected, it may be desirable to obtain a Certificate of Confidentiality although such certificates may not include all relevant areas like domestic abuse (Wolf & Zandecki, 2006).

The 1996 Health Insurance Portability and Accountability Act (HIPAA) has imposed some additional regulatory constraints on research information derived from medical and other covered settings and from some kinds of patient records. However, data from affected records can still be used for research if it is de-identified. A link to further information on HIPAA and its effects on research activities is given later (see Links to Digital Materials).

Vulnerable Populations

All negotiations of consent for participation in research depend on the “presumption of the universalized subject” who can act freely and rationally in forming a social contract (Halse & Honey, 2005, p. 2152). While the implications of this assumption have not been fully addressed, it is well understood that some potential research participants are vulnerable in the consent process for a variety of reasons, many of them of interest to social work researchers. Cognitive or communicative vulnerability, institutional vulnerability, deferential vulnerability, medical vulnerability, economic vulnerability, and social vulnerability must all be considered (Anderson & Dubois, 2007). CIOMS guidelines and federal regulations (see the OHRP website) also give special attention to studies involving pregnant women, fetuses, and neonates.

Children and adolescents are not legally able to represent themselves in consenting to participation in research, although the age(s) and circumstances at which adolescents are considered able to consent vary across jurisdictions. The consent of a parent or guardian must be sought when children are to participate in research, unless it can be demonstrated to an IRB that seeking such consent could in fact endanger the child, as can be the case, for example, if youth who are gay, lesbian, bisexual, queer, or questioning are to be studied and if they have not disclosed their sexual identities to their parents for fear of rejection or abuse (Martin & Meezan, 2009). In such cases, a waiver of parental consent can be granted and an advocate appointed to assist each participating young person. Children and adolescents who are wards of the state also present a special circumstance, and each state has its own method of assisting them with an advocate for research consent purposes.

To respect the autonomy and dignity of adolescents and older children, one must also obtain formal assent for research participation from them. Youth should participate in research only if both parental consent and participant assent are obtained (see the OHRP website for information on involving children and adolescents as participants in research, including models for assent documents).

Prisoners, people who live in institutions, or others in need of services are considered vulnerable in the consent process either because they may feel undue inducement to enroll in studies (for example, prisoners may volunteer to demonstrate good conduct) or because there will be negative consequences if they decline (Arboleda-Flórez, 2005). Similar concerns about power issues arise in research with immigrant and indigenous groups (Hugman, Pittaway, & Batolomei, 2011; Schinke, Enosse, Peletier, & Lightfoot, 2010). In addition, anyone who might have diminished capacity to understand what is being asked of them as a research participant or to make decisions in their own best interest is also considered vulnerable. This group includes those with some forms of mental illness, those with intellectual deficits or cognitive impairments, some who abuse drugs, and some of those with life-threatening or serious medical illnesses (APA, 2006; Anderson & Dubois, 2007; Dunn & Misra, 2009; Fisher et al., 2002; Roberts, 2002). Only when a person has been legally determined to be incompetent is incapacity to consent clear-cut, and overprotection can restrict research on important problems, especially studies in which the perspectives of those with any of these conditions are included.

Most people who have disorders or disabilities can, in fact, consent to participation in research if communication in the consent process is adapted to their needs, as in reading the consent form aloud for the visually impaired or communication in American Sign Language (ASL) for those who are deaf, although issues of confidentiality can be magnified in their relatively small social networks (Eckhardt & Anastas, 2007). Social work research often involves people considered vulnerable because there may be a risk of painful emotional reactions consequent to speaking of sensitive personal and emotional issues, such as in research on those who are bereaved (Stroebe, Stroebe, & Schut, 2003) or who have experienced trauma (Mudaly & Goddard, 2009; Newman & Kaloupek, 2009). When and how to approach such potential participants must be carefully considered, and it is common to build in safeguards, such as offering referral for professional assistance to any participant who seems to be distressed. In these situations, to avoid potential conflicts of interest or dual roles (Congress, 2001; Landau, 2008; Lunt & Fouché, 2010), any assistance offered must be from an independent source.

Clinical and video or audio data: Anyone who is observed or interviewed in person can be offered confidentiality protection but such data are by definition not anonymous. Similarly, individual clinical or case study data can include enough detail that inferred identification of the participants can be made by someone who may know them. As in case reports used in education and training, alteration and disguise of selected information is the usual remedy for this problem. However, when audiotaped or videotaped information is collected, these data pose special challenges in safeguarding participant, provider, family, and community privacy (Papdemas, 2009). Separate and specific consent to the collection of such data and to any sharing of data in these forms, as in conference presentations of findings, should be obtained (see OHRP for sample forms).

Minimizing Risks to Scholarship and Knowledge Development

There is no benefit to the conduct of social work research unless there is confidence in the integrity of the profession’s knowledge-generating and dissemination activities as a whole. The Office of Research Integrity (ORI) describes four key values in this area: honesty, “conveying information truthfully and honoring commitments”; accuracy, “reporting findings precisely and taking care to avoid errors”; efficiency, “using resources wisely and avoiding waste”; and objectivity, meaning “letting the facts speak for themselves and avoiding . . . bias” (Steneck, 2007, p. 10).

Although there are few well-known examples of questionable ethical conduct in social work research and scholarship, the kinds of problems that can arise are known from related fields. The most common kinds of research misconduct are the fabrication of data, the falsification of data, and plagiarism (Gibelman & Gelman, 2001; Steneck, 2007). While the last is known to occur in social work and in social work education, there is little or no systematic information available about the occurrence of plagiarism or the kinds of sanctions imposed when it occurs. The APA Style Manual (2020) has a very useful and succinct definition of plagiarism: “the act of presenting the words ideas or images of another as one’s own” (APA, 2020, p. 253), and citing the work occasionally is not enough. The Manual recommends the routine use of plagiarism detection software in the preparation of scholarly papers and research reports.

Conflicts of interest: Collaboration is common in social work research, and people involved in research occupy different positions and have differing access to power and resources, differences that occur among those conducting the research as well as between researchers and participants. Researchers’ sources of funding are coming under increasing scrutiny for the effects they may have on findings and their dissemination (Oliver, 2003), and some journals now require disclosure of any funding received and a statement that there is no conflict of interest. In program evaluation, it may be difficult to draw conclusions that are critical of the agency studied or that may compromise program funding. Agency employees who are study informants may feel vulnerable to unintended harms, which must be minimized (Hilton, 2006). Different stakeholders in the research may have conflicting needs and desires concerning intellectual property, publication, and the ownership of the data collected. Open discussion of all matters such as the ownership of data, copyright (of publications or for any data collection instrument developed), authorship (including with students), supervision of findings, and their dissemination is recommended at the inception of the study and periodically throughout (CSWE, 2007; Macrina, 2005; Netting & Nichols-Casebolt, 1997; Oliver, 2003; Shamoo & Resnik, 2009; Smith, 2003; Steneck, 2007).

Authorship: Although the principle of not taking credit for the work of others is clear, there are no social-work specific guidelines for addressing authorship issues; in fact considerable variation in beliefs exists among social work educators (Apgar & Congress, 2005a; Gibelman & Gelman, 1999). In addition, there is evidence that many social work researchers, especially when students, have had adverse experiences with authorship (Netting & Nichols-Casebolt, 1997). Quite a few doctoral students report that they have not been given adequate recognition for work done in conjunction with faculty (Anastas, 2012). Social workers’ beliefs about the weight that should be given to some tasks when determining authorship credit, such as data analysis (Apgar & Congress, 2005a), is at variance with that in other fields (see, for example, chapter 2 in Shamoo & Resnik, 2009), and more study and discussion of authorship issues and practices are needed. Resources from other fields should be consulted (e.g., Street, Rogers, Israel, & Braunack-Mayer, 2010; Welfare & Sackett, 2010).

Current Issues and Future Trends

Qualitative methods: Perhaps because the researcher is seen as an instrument of the research in qualitative studies (Haverkamp, 2005), ethical dilemmas faced by researchers and difficulties with IRB approval can be concerns. Face-to-face encounters with participants discussing emotionally laden experiences and prolonged engagement with them can evoke strong emotional reactions in researchers or even a conflict between the “helping” and the “studying” roles (Davison, 2004). Qualitative researchers have been more ready than some others to consider power differentials in the relationships between researchers and study participants; to call for researcher reflexivity, reciprocity, and participant empowerment; and to consider the implications of all these factors for research ethics (Christians, 2005; Haverkamp, 2005; Lincoln, 2005). However, qualitative researchers still may encounter problems with IRB approval if committees are not knowledgeable about how scientific qualitative studies are (Blee & Currier, 2011).

Participatory action and community-engaged research: Social work researchers concerned with the social justice aims of research are embracing an investigational model, most commonly called participatory action research (PAR) or community-based participatory research, that seeks maximal power-sharing between researchers and those being studied, individually and collectively. In these kinds of studies, procedures and findings are generated collaboratively over the course of a study, making it difficult to comply with what IRBs require in an application for approval of a study, since sampling plans, data-gathering procedures, data analysis plans, and even the nature of anticipated findings are not pre-determined. Articulating the risks and benefits of these kinds of research and explicating how protections can be offered using different procedures are essential (Banks et al., 2013; Brydon-Miller, Greenwood, & Eikeland, 2006; Khanlou & Peter, 2005).

Internet-based studies: Research using the World Wide Web is now more common, and ethical issues in Internet research is an important area of discussion (Enyon, Schroeder, & Fry, 2009; Ess & AoIR, 2002; Rhodes, Bowie, & Hergenrather, 2003; Whitehead, 2007). Internet research can involve simply recruiting participants for conventional forms of data gathering such as surveys or analyzing content on existing sites such as chat rooms or other public sites. Ethnographic and qualitative research can also be done in cyberspace (Buchanan, 2004). Informed consent can be compromised without face-to-face interaction, as when a child represents himself or herself as an adult and parental consent is therefore not obtained. Anonymity or privacy of data collected may be limited as IP addresses may be given, although some software will allow reports to be generated without them. In addition, again because there is no face-to-face interaction, it is difficult to determine if a study has produced distress in a participant.

Ethics in Big Data research is an area of controversy (Metcalf & Crawford, 2016; Rothstein, 2015; Zimmer, 2018). Risks to privacy and instances of harm to participants have occurred in such studies. Although not yet normative, IRB review of the ethics of such studies is recommended. Doing Internet-based research, including Big Data research, requires staying current with emerging best practices in the ethical conduct of such studies.

Decolonizing social work research: The research methods and ethical standards, for the conduct of research that guides social work research in the United States and elsewhere, derive from Western European concepts of scholarship. These date back to the Enlightenment period when the development of modern science was deeply entwined with colonialism. Smith (2012) describes the expropriation of indigenous knowledge and the usual lack of engagement of indigenous people in the design of the research and presents models for respectful and constructive engagement with indigenous people and communities. In Canada, Inuit people have provided input into national guidelines on research ethics, and Walters et al. (2009) describe collaborative and non-exploitative ways to conduct research in Native American communities.

Conclusion

Social workers engaged in research involving deception, which can be used only when the research question cannot be answered without it, must seek out ethical guidelines specific to this situation. Feminist and queer theories also address ethical issues in research, which should be considered when these theories inform a research study.

Social workers, especially those who are active researchers, are often called on to serve as IRB members in biomedical and other settings because they are knowledgeable about vulnerable populations and are seen as ethics- and value-oriented professionals. Additional training is required to serve as an IRB member, which enhances the knowledge needed as a researcher.

Links to Digital Materials

  • CSWE National Statement on Research Integrity in Social Work. The Council on Social Work Education (CSWE) convened a work group that developed this National Statement on Research Integrity in Social Work.
  • Office for Human Research Protections (OHRP). This federal office ensures adherence to federal regulations for the conduct of research studies and for the Institutional Review Boards that oversee individual studies at a local level within these guidelines. Online training in research ethics and information about dealing with vulnerable populations in research (e.g., children, prisoners). The Common Rule and the 2017 revisions to it can be found here.
  • Office of Research Integrity, in the U.S. Department of Health and Human Services, has a publication entitled “ORI Introduction to the Responsible Conduct of Research.” The office’s newsletter is also available on their website.
  • Protecting Personal Health Information in Research: Understanding the HIPAA Privacy Rule. The 1996 Health Insurance Portability and Accountability Act (HIPAA) imposed new restrictions on some research activities, including clinical and health services research. Information and links to additional topics within this area, including a summary booklet about the regulations for researchers, are provided.
  • Certificates of Confidentiality (CoC) – Human Subjects. This NIH site is the “kiosk,” or entry point, for further information on Certificates of Confidentiality and how to apply for one.
  • In 2002, the Association of Internet Researchers (AoIR) membership, which is transdisciplinary and international, approved a set of ethical guidelines for researchers using the Internet. These are intended to supplement, not supplant, any profession-specific standards, and the site also includes links to other useful resources.
  • Belmont Report. This is the link to a copy of the 1979 Belmont Report, codifying ethical standards for research in the United States.
  • Nuremberg Code. The complete text can be found here.
  • Declaration of Helsinki. This site has the complete text of the 1964 Declaration of Helsinki as reproduced in the British Medical Journal, No 7070, Volume 313, 7 December 1996.
  • International Compilation of Human Research Standards. Office of Human Research Protections (OHRP), U. S. Dept. of Health of Health and Human Services. This website links to a lengthy document detailing ethical standards for the conduct of research with human beings by region and nation, including international standards, compiled by OHRP.

Publishes empirical studies on research ethics and governance, including emerging issues in human subject research in general and in specific fields.

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