Ethical Autism Research Cultures and Community Engagement
Name: Chloe Silverman, PhD (firstname.lastname@example.org; 267.230.1948)
Michael Yudell (Public Health) and Chloe Silverman (Politics and STS) are working on a NSF-funded project, "Ethical Autism Research Cultures and Community Engagement" (National Science Foundation Grant No. 1737149, 2017-2020). The study seeks to identify the ethical values that different stakeholder groups understand as relevant to basic autism research design, and to examine whether and how a range of community engagement practices may promote those values, as evident in both scientists' statements and research output. During the spring quarter, we will have collected data in the form of structured interviews with representatives of three stakeholder groups (people with autism diagnoses, parents and/or caregivers, and service professionals) and over the summer a graduate RA will be working on coding those interviews. We will also be working on a journal article surveying existing published work on the ethics of autism research design (as opposed to ethical conduct of research, meaning how human subjects are protected when they are participating in research). This is the section of our summer work that the Undergraduate Research Fellow would contribute to.
This abstract provides more details on the funded project:
Associated Independent Study
The independent study accompanying this project would be titled Ethics of Autism Research and would survey published work on the ethics of autism research, including ethical lapses in historical studies (the readings will include some published primary source texts from the 1950s through the 1970s) and historical and contemporary efforts to better protect research subjects. The student will also read some more general texts on contemporary bioethics as well as critical and empirical bioethics, some drawn from our NSF project proposal documents. This independent study will directly support the student's involvement in our research project.
The student will gain an introduction to the field of bioethics, including critical bioethics and empirical bioethics, as well as a background in questions relevant to the ethics of autism research conduct and study design.
During the 10-week summer session, in addition to concurrent work on data analysis for the project, we have planned to write an article for submission to a bioethics journal or autism research journal on the subject of autism research design ethics. The student will work with us on this article, with a possible opportunity for coauthorship on the article.
- Compiling a bibliography of sources for the article.
- Analyzing existing published work based on critical bioethics and empirical bioethics frameworks.
- Working with us to develop an outline for the article.
- Drafting sections of the article in consultation with us.
The student will almost certainly have access to a carrel at 3101 Market in the Social Science Lab space and will also work in the Drexel library. Some meetings may take place at the School of Public Health.
Almost certainly Wednesday mornings from 9:30-10:30, although this is somewhat flexible depending on the needs of the student.
April 10, April 11, April 12