Addressing a History of Fears About Clinical Trials: An Expert Weighs In

Published on

Topics include: Clinical Trials

Fear of experimentation, distrust and uncertainty deter many patients, especially minority patient populations, from participating in clinical trials. How are cancer patients cared for in clinical studies? Clinical trials expert Dr. Richard Schilsky, from the American Society of Clinical Oncology (ASCO), addresses the history of clinical trials and explains how research studies are conducted today to help reduce negative stigmas. Tune in to hear Dr. Schilsky discuss patient consent and safety, how trials are regulated, placebos and morewhile patient Mel Mann and care partner Cecelia Mann also weigh in.

This is a Patient Empowerment Network program produced by Patient Power. We thank AbbVie, Inc., Astellas, Celgene Corporation, and Novartis for their support.

View more programs featuring , , and


Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Dr. Schilsky, let's talk about another reality of trials.  There's a history certainly and some fear still in the black community of whether they were tested on, without their knowledge even, going back years and the general thought, you've heard it through your career, I'm sure, people say, well, I don't want to be a guinea pig for a couple reasons.  One is we don't know if it's going to work.  And second of all if there are different arms of a trial I don't know if I'm going—I'm going to go to all this trouble and expense, I don't know if I'm going to get the good stuff.  So maybe you could speak about that a little bit.  First of all, the fears of being experimented on, and then also about whether you will get what could be a breakthrough. 

They make sure that the trial has an appropriate consent process associated with it, that it's explained in plain language to patients, so I think these days a lot of those concerns no longer exist.  And I hope that people can get beyond the history that led to some of those concerns. 

The whole point of doing the research is to determine if the new thing is better, and of course we always hope it will be.  It's not always better, but sometimes it is, as in Mel's experience.  And I think this has to be clearly laid out to patients.  They have to clearly understand why the research is being done.  In many trials nowadays even if the patient is assigned to get the standard of care treatment there still may be an option to get the new treatment at a later point.  So if the standard of care doesn't work many times there's still the opportunity to get the new treatment following the standard of care treatment. 

So the trial really boils down to not standard versus new but new versus standard followed by new.  So eventually everybody may have a chance to get the new treatment.  That's not always the case, but I think the key—my key take-home, in a sense, is that we're doing the research because we think and we hope the new treatment is better, but we have to do the research to prove that.  And everybody in a clinical trial I think can be assured that they're going to get, at the very least, the best available standard treatment. 

But I would say to anyone else who is contemplating a trial and that person and their caregiver, their spouse, to just educate yourself, and get as much information as you can, ask as many questions as you can, but please don't just throw it away out of hand.  It's definitely worth considering.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Related Programs

Why Are Minorities Often Underrepresented in Clinical Trials?

How can ethnic minorities gain access to more clinical trials? Watch as clinical trial experts Dr. Richard Schilsky and Cecelia Mann share their perspectives.


Step One in Trial Participation: How Can Patients Learn About New Trials?

Myeloma survivor Reina Weiner and Lazarex chairman Dana Dornsife discuss ways patients can learn about new clinical trial opportunities and share resources to help alleviate the financial burden.


Clinical Trial MythBusters: What Is the Value of Diversity in Clinical Trials?

Is diversity, gender, age and ethnicity important in clinical trials? Mel Mann, a 20+ year CML survivor and a a highly respected leader in the field of clinical oncology weigh in.


Precision Medicine: Can Biomarkers Help Patients Find a Good Fit for Clinical Trials?

A panel of experts discuss how precision medicine may influence trial eligibility, cost of treatment, pace of drug development and more. Can biomarkers make the clinical trial process more efficient? Watch now to find out.


Randomization in Clinical Trials: An Expert Explains Patient Equality

Patient advocate Jim Omel tackles the hot-button issue of randomization in clinical trials. What determines patient equality? How are treatments allocated amongst patients? Watch now to learn more.


How Can Clinical Trials Be Improved to Enhance the Patient Experience?

Patient advocate Jim Omel and leading expert Dr. Mike Thompson break down the design and purpose of clinical trials and give their perspective on how it could be more patient-friendly.


Is Some of the Exclusion Criteria in Clinical Trials Causing Roadblocks?

How does exclusion criteria hinder clinical trial participation? Watch as our panel of myeloma experts from ASH 2017 share active efforts to promote patient participation and how you can get involved.


Join Our Community Register for Events Read Our Latest Blog

Page last updated on September 9, 2019