WWTPD: Participating in Medical Study? UPDATE IN OP

I am participating in a life-long cancer study (which started two years ago.) I had to answer a long questionnaire, and occasionally they ask/are going to ask for a blood and urine sample and probably an updated questionnaire. I don't think they take samples at other times without me knowing about it.

What part are you hesitating on?

I’m involved in a lifelong study that started when I was pregnant with my DS (now 8). It’s called ECHO and they’ve done blood work, psychological testing etc on DS and I. It’s looking at environmental conditions from pregnancy on up on the kid. I’m super fascinated by it. We have a video visit next week where they’ll do a weight, height, psych evaluation for DS and I. I also have an online survey to do.

They already have your blood work so I’m not sure why you’re hesitant to continue?

Yeah, I think your hesitation is with an outside entity contacting your Drs and getting a sample of your tissue. I think that is a pretty rational feeling, but I do think the right thing to do for full participation in the study is to let them have a sample to study

I have a rare disease and am one of the most severe cases in the world. I've been the subject of various studies and clinical trials. Mayo has a one inch portion of my stomach. There won't be a cure in my lifetime for 2 of my main diseases, but if I can help others I will certainly do so. I'm hoping that they'll take my body when I die and use it to help find a cure for my main disease.

If you can help other people why not do it? You have blood and might as well use it for good.

I would do it if I was asked. I think the benefits for society greatly out weigh any reservations I might have for me personally.

In my experience, the wonderful feeling of knowing that you have actively helped in the research far outweighs any hesitancy to do so.

First, your participation is optional. Maybe if you could pinpoint your hesitation, you would feel more comfortable?

I have been a part of the Nurses Health Study 2 for almost 35 years. I have several friends who are also a part of it. In addition to yearly questionnaires, I have also submitted blood and urine on various occasions. I always report changes in my health and am currently in a subset of participants who have undergone significant stress response.

Every year, each participant gets an update on the research and it is fascinating! This is the largest health study going on in the United States and their participation/return rate is > 90%. I understand they chose nurses originally thinking they would get a good return rate. This study only includes women. I am really proud to be involved in it. Medical advancements are critically linked to research studies.

Some people even leave money in their wills to enable the continuation of this research. Amazing!

All of this is to say that I wonder if your concern is privacy? Speaking just for me, I have never once had my privacy violated by this study and I have given them some pretty "personal" details. Although they know my name, everything I return only has my subject ID (a chain of numbers) on it.

Whatever you decide will be the right choice for you.

Any idea why you are now a bit reticent? Has your sister been asked to participate further as well? My guess is they are asking because you have now had cancer.

I've never been asked to join a study like this, but I would in a heart beat. I had a fairly common cancer that came up somewhere very unexpected. I had non-hodgkins lymphoma, that arose outside of my lymph system. In the big book of lymphoma, it is suggested that that could possibly happen. I'm patient zero. When I finished treatment, my Dr went back to research. He is the author of the big book of lymphoma and wanted to do the update.

I am a part of that same cancer study, although I luckily have not had any problems. Given that I've already given them blood, I don't think I would mind giving them additional blood/tissue within reason. But as you know, it's fully optional and if you aren't comfortable with doing it, that's also fine.

If you continue to contribute, the warm feeling of helping others will outweigh any concerns that you may have.  And feeling good about yourself is always a positive thing.   You got this.  And, thank you for doing your part.  

May God bless you TXMary! So glad to read of your survival.

My best friend was diagnosed with breast cancer at 39 and she will turn 69 in two weeks. I love a good survival story!

My DH allowed his tumor to be studied. He was identified by a number, although obviously someone would know his name and number. I think we only had one follow up from that.

He also participated in a clinical trial.

If you aren't comfortable, that is ok! Don't feel badly about it.