As an extension of our Member Appreciation Month series of member interviews, we will continue to introduce you to more of our members, individuals who work to advance ethical research on a daily basis. Please read on to learn more about their professional experiences, how membership helps connect them to a larger community, and what goes on behind-the-scenes in their lives!
Today we’d like to introduce you to Lauren Perez, IRB manager at New York University Langone Medical Center.When and why did you join the field?
I joined the field close to four years ago, starting as a research coordinator; I now work for the institutional review board (IRB). Anyone who knows me will readily affirm that my favorite question is “why?” My mother always tells the story of the first time I watched a scary movie when I was a little girl. It happened to be Nightmare on Elm Street. She was waiting for me to say I was too scared to go to sleep after watching Freddy Krueger, but instead I was quiet for a few minutes before turning to her and saying, “I wonder why people hurt other people.” Research is the work that aims to answer “why,” a question with an endless scope of focus. Working both on a research team and as a member of IRB staff allows me to play a role in helping to answer those questions, while ensuring human subject protections. What is your favorite part of your job?
My favorite part is working through the ethical considerations that arise in human subject protections. There is no black-letter law on how to manage each situation, and scientific and technological advancement occurs significantly faster than our regulations can catch up. Creating a balance between advancing research and protecting subjects in studies that test regulatory principles is the best way that we can handle this, as approval requirements are so unique that we often confront the fact that we need to make the best decision for both sides. Needless to say, there are rarely dull moments. Considerations for minorities in research and non-English speaking subjects are of specific interest to me. What is the last movie you saw?
American Gangster. I did not get to see it while it was in the theater! What’s your after-hours guilty pleasure?
At the risk of sounding rather boring, my guilty pleasures are crossword puzzles and reading books unrelated to schoolwork. I will be graduating with a masters of social work from New York University in May 2011, so my reading is usurped by school assignments. Every time I pick up the newspaper for the puzzle, my conscience nags me about an assignment that I should be doing for school! Why did you join PRIM&R?
I joined as part of the “Registration plus membership” option for the 2009 Advancing Ethical Research Conference. What is your favorite member benefit?
My favorite benefit is the Newsletter. It always keeps me updated on the latest hot-button topics in research, and informs me of all the upcoming webinars PRIM&R will hold to discuss them. If you were planning our next conference, who would you select as a keynote speaker?
While I do not have a specific person in mind, I think that I would select a research participant. We make decisions based on what we think is ethical and practical, but I believe that hearing directly from the people who we work to protect is fundamental in helping us to make the best determinations. What do you believe is a key challenge facing the field of research ethics?
Informed consent, informed consent, informed consent! This issue is not as clear-cut as it sounds. There is a stark difference between “consent” and “informed consent.” Simple consent is giving someone permission for something. Informed consent involves two necessary components: that the person has all of the information necessary to make their decision, and that the person is competent enough to make said decision. There are obvious situations when competence comes into play, such as research involving subjects who might be cognitively impaired. However, there are other issues that are just as important in making this determination. Are the subjects being enrolled fluent in the language of the research team? Were the subjects “tested” or asked to explain what they understood from the consent process? Is the research explained in an age-appropriate way to children when they are involved? A signed informed consent document does nothing to show that the subject understood what they were getting involved in, just that they gave permission. We also see this issue of informed consent arising in this age of genetic research, especially in samples collected with consent to be stored for future research. What is the balance? How can we meet the criteria of “informed consent” for situations in which testing is done that we could have never predicted years ago when consent was originally obtained? This issue of informed consent is really at the forefront of the field, and one that we struggle to navigate in our mission to advance science through ethical research. Thank you for being part of the membership community and sharing your story, Lauren. Good luck on all those crosswords!If you’d like to learn more about becoming a member, please visit our website today.