Does participating in research benefit you?

I saw a post on Twitter recently from Jody (@jodyms), who was so excited to be able to participate in a cancer research trial.  And I was thrilled to see it.  There is a lot of bad information out there about research.  And, yes, there is still too much weak scientific research going on and we haven’t fully accounted for the unethical research practices of our past.  But here’s why we shouldn’t throw the baby out with the bath water.

There is lots of research out there that can help you.

I’m going to do something that may not be really popular, or good for my career, but let me explain how I’d talk to my mom and her friends about participating in research.  Let’s say one of the ladies in my mom’s yoga group, Barb, was approached about participating in a 6 month weight loss trial.  Women of her age and menopausal status are a popular demographic for these kinds of studies that promise 10% body weight loss (or more) in a fairly short time with an intense tightly controlled dietary regimen.  They’ll measure all kinds of physiologic changes.  And this kind of science is valuable – it might provide clues to what happens in the body when weight changes – helping us better understand why weight changes lead to disease risk changes.  Or, as I’ve seen in plenty of grant applications, identify the physiologic or molecular target that we can put a drug on to get the benefit of weight loss for health, without the work of losing weight.  We need people who will participate in trials like these – they are important for advancing science.  But is there a real benefit for Barb?  Honestly, maybe not much.  The study isn’t interested in helping Barb make better, healthier, choices.  They aren’t including the behavioral strategies she needs to achieve long term weight loss.  That’s not their goal. (Harsh? yes.  True? pretty much.)  So when the study is over, Barb will go back to living her life and the weight will likely come back.  (You can say maybe not, but I can pull a pile of studies that show this is what happens – achieving short term weight loss is relatively easy in science, keeping it off is not. Most people gain the weight back, and then some – so they are worse off.)  And it turns out, weight cycling is actually not good for your health.  Maybe participating in that study does more harm than good for Barb.

But what if Barb was approached about participating in a weight maintenance study?  Honestly, it would probably sound a whole lot less appealing to Barb, who’d like to lose a little weight.  But the weight maintenance study is focused on helping Barb make long term changes in her life.  Those that are durable.  Durability is what matters for your risk of heart disease, diabetes and cancer.  Is Barb going to see a benefit from participating in this study? Yup.  Because even if she doesn’t lose any weight, if she doesn’t gain any weight, she’s better off.  The reality is there all kinds of in between and Barb needs to know what she’s getting and what she’s not getting.

I’m not saying people shouldn’t participate in trials that provide them with no direct personal benefit.  The generous men and women who have knowingly volunteered to do so have advanced science in countless, critical ways. My lab does BOTH kinds of studies.  We ask people to complete surveys during their cancer care that will provide us with important information to identify intervention targets and it won’t directly benefit the men and women who complete those surveys.  But there is also science out there that can benefit the participants, directly, and we do this science too.  If you aren’t willing to do the former, you might be willing to do the later.  If you’re asked to participate in a research study, ask the questions and find out more before you say no.  It might be a study that helps us advance science or it might be one that helps you AND advances science.

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