Stakeholders

In the US

Agencies within the federal government

The key player in the federal government, OHRP is housed within the Department of Health and Human Services. OHRP makes policy, provides guidance, regulates, enforces, and provides educational outreach with respect to human subjects research and IRB matters. Most research institutions have formal agreements ("assurances") with OHRP. This is the authoritative federal source for most IRB issues.

A committee charged with advising the HHS Secretary "on issues of human subject protections. OHRP's director serves as the Executive Secretary for SACHRP, and the Office provides technical and logistical support to the Committee" (OHRP website). Issues around the appropriateness of applying the biomedical model to social science and behavioral research are on SACHRP's agenda.

Organizations focusing on human subjects research

As suggested by its name, this organization is devoted to issues relating to social and behavioral research. Initially a working group within an advisory committee to OHRP, the group is now housed within the American Educational Research Association (AERA), and funded by NIH's Office of Behavioral and Social Sciences Research. Under the leadership of Dr. Felice J. Levine, the group produces influential reports and recommendations, and has a strong educational outreach component. The web site includes a wealth of pertinent history, information, suggestions, recommendations, and strategies.

A relatively new organization that "offers accreditation to institutions that conduct or review research with human participants".
COSSA is a founding member of AAHRPP, and APPAM is a supporting member of the organization.

 

Dedicated to creating, implementing, and advancing the highest ethical standards in research," PRIM&R is the professional home of those involved in the regulation of human subjects research. Attendees at PRIM&R's annual meeting include University compliance officers, IRB administrators and chairs, and representatives of federal agencies that are involved in human subjects/IRB issues.

Social science professional organizations and IRB issues

Note: The links that appear below lead to organizational statements that pertain specifically to the federal regulatory/IRB approaches. Many of these same organizations have codes of professional conduct that speak to ethical issues broadly.

COSSA is an umbrella organization that is supported by over 100 professional associations and other social science research entities. News on IRB issues as they apply to social science research are featured in the COSSA Update, for example

The AAUP's Committee on Academic Freedom and Tenure has issued this critique of the current state of regulation of social science human subjects research.

AERA has shown leadership in the social science IRB community by housing the Social and Behavioral Sciences Working Group, located here

Resources and relevant readings on human subjects research for historians are posted here.

This organization's Statement on Ethnography and Institutional Review Boards can be found at here

APPAM is a member of COSSA, and is also a supporting member of AAHRPP. An announcement of the AAHRPP affiliation, and a reference to the importance of IRB issues, appears on page 2 of recent newsletter

NASPAA has not yet dealt with IRB issues in a formal fashion, although IRB/human subjects concerns have been the subject of informal discussion by members, according to NASPAA executive director, Laurel McFarland.

Outside the US

Under the auspices of the UK's Social Science Research Council, the Research Ethics Framework project is housed at the University of York. Their website offers a glimpse at some innovative research into human subjects research, and serves as a portal to a number of research codes in Europe and elsewhere.

The Social Research Association is the professional body of policy orientated researchers in the UK; here are their ethical guidelines.

The UK's DPW serves the similar functions to the US Department of Labor + the welfare portions of Department of Health and Human Services. (Doing the Right Thing) outlines DPW's approach to ethical and legal issues in social research. As the authors note in their preamble,  until now there has been no documented ethical guidance for DWP Researchers to work to. As much of our research is amongst DWP's customers, many of whom might be thought of as vulnerable and many depend on the Department for benefits, it is important for us to be clear about our duty to undertake research sensitively, ethically and also legally.