TABLE 1—

Ethical Challenges and Responses in Public Health Research

Ethical Challenges	Responses	Recommendations for Action
People with developmental disabilities have been exploited in and outside research. The disability rights movement challenges the ethics of using exclusion and autonomy-restricting practices as a means of protection.	Find ways to safely and respectfully include people with developmental disabilities in public research.	Learn about the disability rights movement.Include people with developmental disabilities as direct respondents in public health research.
Experiences with exploitation contribute to feelings of suspicion and distrust among people with developmental disabilities.	Use human rights frameworks to inform decision-making about ethical public health research practices and the treatment of people with developmental disabilities in research by respecting dignity and autonomy and promoting direct benefits associated with research participation.	Demonstrate respect for people with developmental disabilities.Provide people with developmental disabilities opportunities to get to know researchers before research participation decisions.Solicit and respond to participant needs and preferences.Teach participants desired skills.
		Share findings with participants.
		Produce findings or policy briefs for use in advocacy efforts.
		Create dissemination materials that promote respect and reduce negative stereotypes.
		Use respectful language in research materials and dissemination products.
		Be responsive to community priorities.
Coercion and comprehension challenges test foundational concepts of research ethics and require population-specific responses.	Modify materials, processes, and contexts to promote comprehension and accessibility and reduce power imbalances.	Simplify language.Make language more concrete and specific.Use visuals.Modify instrument delivery formats (e.g., oral instead of written administration).
		Provide materials in alternative formats such as Braille, text-to-speech, and electronic formats that interface with participants’ assistive technology.
		Provide American Sign Language translation.
		Work collaboratively with people with developmental disabilities, including self-advocacy groups.
		Allow individuals to consult with a trusted other in making research participation decisions.
		Educate people in the lives of people with developmental disabilities about the value of self-determination.
		Establish protocols for being alert to, and addressing coercion to, participate.
		Train research staff on power issues.
		Find ways to avoid or strengthen mandatory reporting of abuse.
		Maintain confidentiality of data.
		Allow more time for consent processes.
		Check in during data collection to make sure the participant still consents.
Deficits-based models of disability linger in science, restricting ideas on the interests and abilities of people with developmental disabilities to contribute to research and the framing of appropriate research questions.	Apply disability rights principles to public health research.	Critically assess underlying assumptions of research aims and protocols, including whether people with developmental disabilities can lead healthy and fulfilling lives.Pursue research that illuminates the strengths and voices of people with developmental disabilities.
		Develop genuine relationships with people with developmental disabilities.
Research practice and policy largely ignores accommodating functional limitations and enabling environmental access to public health research for people with developmental disabilities.	Modify measures, materials, practices, and policies to make them accessible to people with developmental disabilities without compromising, and possibly even improving, study reliability and validity.Establish policies that enable greater support for developing accessible public health research projects.	Make only changes necessary for accessibility, not for individual preference.Make minor modifications, e.g., to the instructions or by adding comment boxes that do not affect constructs.Make modifications that better present constructs to the population (similar to cultural tailoring or language translation).Offer instruments in alternative formats.
		Make physical modifications to the research environment, or meet with participants in the environment of their choosing.
		Pilot test instruments and protocols.
		Advocate in universities and at state and national levels for increased funding for projects to allow the resources and time required to include the input of people with developmental disabilities.
		Revise academic expectations to reflect the timeline required to make public health research accessible to people with developmental disabilities.
		Establish university and institutional review board policies and practices that allow the involvement and compensation of people with developmental disabilities.
People with developmental disabilities are marginalized from the broader context of public health knowledge production. As a result, public health research agendas may not include research perceived as worthwhile by people with developmental disabilities.	Increase the influence of people with developmental disabilities in public health–related science.Pursue public health–related research that meets the priorities and needs of people with developmental disabilities.Pursue community-engaged public health research.	Establish policies to include people with developmental disabilities on research teams, institutional review boards, advisory boards, and grant review boards and in peer review processes, academic and scientific occupations, policy positions, and other stakeholder settings.Create procedures for making inclusion in these bodies and roles accessible to people with developmental disabilities.
		Address research aims people with developmental disabilities perceive as relevant.Question whether interventions could risk further harming people with developmental disabilities, including because they may lead to efforts to prevent the birth of people with developmental disabilities or because they convey negative perceptions of people with developmental disabilities.
		Include members of the developmental disabilities community as members of the research team.
		Learn what people with developmental disabilities feel is important by communicating with them directly.
		Listen to what people with developmental disabilities feel are priorities in public health research and develop projects around community-identified needs.
		Work with people with developmental disabilities to improve their quality of life by supplying them with data or interventions they desire to live healthy lives.