by Andrea Johnson, JD, CIP, Regulatory Specialist in the Research Integrity Office at Oregon Health and Science University
Greetings, readers! I am beyond excited to attend my first Advancing Ethical Research (AER) Conference this year and honored to be there as a member of the PRIM&R Blog Squad. I look forward to sharing the conference with you!
In my current role at Oregon Health and Science University (OHSU) in Portland, Oregon, I work to develop and continuously improve OHSU’s policies and procedures surrounding the institutional review board (IRB) process while ensuring that they are compliant with applicable laws, regulations, ethical guidelines, and other requirements. I also analyze legal, regulatory, and ethical issues concerning specific research proposals, including FDA-regulated and human embryonic stem cell research. Before coming to OHSU, I studied bioethics and health law while earning my degree from the University of Minnesota Law School.
Research constantly progresses and moves us forward, and this means that research ethics must continually evolve as well. This year’s AER Conference lineup looks to be a wonderful gathering of professionals with a diverse array of backgrounds and experiences, ready to share new ideas and innovations. There are so many things I am looking forward to, but here are a few highlights:
- Regulatory, Ethical and Technical Challenges in Internet Research—The internet makes a wealth of knowledge accessible at our fingertips, but also creates interesting issues surrounding privacy and confidentiality, as well as recruitment and informed consent. In my office, we are seeing more and more research involving the internet, and new ethical questions arise as researchers harness this resource in creative new ways. I am eager to hear what the presenters in this pre-conference program have to say on the topic.
- Laying the Foundation for Better Consent: Guidelines, Templates, and an Online Tool Called Consent Builder (Session D09)—I know I’m not alone in believing that consent forms for research studies have, in general, become way too long and complex. In addition to the obvious challenges for research subjects in understanding the document, the complexity of institutional requirements can make it difficult for researchers to draft good consent forms. In this session I hope to gain insight on ways to make this process better for researchers, subjects, and IRB reviewers alike.
- "Front-Door” Consent for Biospecimens: Making it Work (Session A16)—This is a model that OHSU has been considering for some time. I am excited to explore ideas that I will be able to apply back home in a practical way.
- To Return or Not To Return: Individual Research Results and the Role of Biobanks (Panel IX)—In addition to its timely subject matter, this session boasts a powerhouse roster of presenters. I share PRIM&R Blog Squad member Susan Trinidad’s enthusiasm for Pearl O’Rourke’s dynamic and engaging presentations. Susan Wolf was one of my law school professors, and I know she can be counted on for a well-thought through and articulate analysis of these issues
I am also eager to connect with other professionals in the research ethics field. The legends I have heard of the AER Conference hold the promise of returning home refreshed and brimming with renewed energy and enthusiasm to bring forth a positive evolution of human subjects protection practices. I simply can’t wait!