Increasing awareness with “Henrietta Lacks”

By Courtney Jarboe, PRIM&R Blog Squad

PRIM&R is pleased to bring you blog posts from the PRIM&R Blog Squad during the 2010 Advancing Ethical Research Conference. The PRIM&R Blog Squad will be blogging every day from the conference, so continue to check back for updates.

I’ll admit that I have not read Rebecca Skloot’s The Immortal Life of Henrietta Lacks.

Yes, I was one of those people at her keynote address quietly raising my hand when that question was posed. However, after her presentation yesterday, I didn’t feel ashamed, but curious about the story that opened such massive dialogue within the general public.

As a result, I found myself in line like many other AER attendees, credit card in hand, waiting anxiously to receive a copy. After purchasing the book, I proceeded to stand in line for Ms. Skloot’s signature. I’ve never experienced a book signing, or even met an author in person before. I found though, in this situation, many attendees were impressed by Ms. Skloot’s approachability, and her down-to-earth attitude. In addition, her goals and values for the responsible conduct of research were aligned with those shared in many of the sessions that have been held in the past two days.

One point that Ms. Skloot made in her keynote address was that not everyone has basic scientific understanding. We can tell people what a cell is or how it is used, but that doesn’t necessarily mean that it is something understandable. More importantly, people outside of science-related fields may not care about some aspects of the science. Ms. Skloot reminds us that the perception of research has been greatly challenged in the past few years, to the point where people are questioning the intentions of researchers and the purpose of research, so it is important to create awareness.

While I was at AER, an article was published in the StarTribune, my local Minneapolis, MN, newspaper. The article indicates that a group of professors from the University of Minnesota Bioethics department sent a letter to the University of Minnesota Board of Regents requesting an investigation into a research study where a participant, Dan Markingson, a schizophrenic, committed suicide.

As the StarTribune article states, the FDA found no fault by the university, and excused both the school and the psychiatry chairman from the lawsuit. While the FDA may have made a determination, bioethicists are still concerned about whether the research team had the ethical capability to enroll and consent Mr. Markingson.

The article also states that this letter included questions about “whether financial incentives from AstraZeneca, the drugmaker funding the study, presented conflicts for the researchers.” While I have my own thoughts about this research study and its issues, the bigger issue is public perception and the future of research participation.

Putting the research study issues aside, we need to think about the general public’s awareness of these stories, and how they will affect trust between potential subjects and research. Issues in research ethics shape the public’s opinion of research, even if the public does not have a full understanding of facts, or what happens behind the scenes.

If you have a moment, take a look at the StarTribune comments posted by the public. They are all over the spectrum. While some comments need to be taken with a grain of salt, there are others that call out mistrust between the public and research.

So what do we do when the public is questioning intentions of researchers and research? How can we, as a research body, work with journalists, movie directors, or authors to provide examples of how research as a whole has learned from mistakes and has proven worthy of their trust? I wonder if there are better ways for us to work with these professionals to tell stories that not only bring forth the issues, but also provide a more encompassing message. I believe Ms. Skloot did an amazing job of providing this message in both her keynote address, and her bestselling The Immortal Life of Henrietta Lacks.