Thursday, October 22, 2009

Research Volunteering? Caveat Emptor with Tiffany Cheng and Hannah Wiberg

This past spring, I saw an announcement through Asperger Adults of Greater Washington (AAGW) that Tiffany Cheng of Ithaca College wanted to interview an Aspie for her Disease and Lifestyle course. I responded, and she introduced me to her research partner Hannah Wiberg. I told them that I would be happy to participate as long as I received a copy of the final project, and they agreed to proceed. Also, they subsequently explicitly repeated their promise to send me a copy when the work, including a class presentation, was completed.

On that basis, I answered many questions in substantial detail, including some notes from my personal life. When the semester was over, I asked Ms. Cheng and Ms. Wiberg for a copy. Only then did they tell me that there was no written document and hence nothing they could copy for me. In fact, they had been specifically instructed not to even include any words in their PowerPoint slides. In short, they lied to me, implicitly and explicitly, to get my cooperation.

I have discussed Ms. Cheng's and Ms. Wiberg's conduct with their professor, associate department chair, department chair, IC's human subjects research review board chair and IC's vice president for student affairs. (I had to begin by tracking down their professor; apparently IC policy was also violated when Ms. Cheng and Ms. Wiberg did not provide that information from the beginning. They also did not honor my request for same.) I do not know what, if any, sanctions have been or may be levied against them.

I have also warned the good folks back at AAGW about this problem. To be sure, assisting with research can be a good thing. It can help others understand us better, and it can help us understand better how we're perceived. I for one will continue participating. We just need to keep in mind that not everyone is honest, in this or any other field.

What do you think?

UPDATE: The student affairs VP and human subjects research review board chair have told me, through the department chair, that "As the issue has been addressed, there is no need for further communication from you to anyone at Ithaca College about this issue."


Corrie Howe said...

I'm sorry this happened to you. I tend to be trusting first as well. I was following a blog of a young man from England with Asperger's because I like insight into my son. I think my son is higher functioning than this young man and definitely in a lot better environment. However, after a couple pleas for money, I stopped following wondering if he really was an Aspie.

I can believe it is possible for someone in his position to be in as much trouble as he was because of the lack of executive function and social skills.

I'm thinking, from what I've been reading on your blog, that my son will be more like you. Did you get a diagnosis early? Did you have early intervention? What are your weaknesses and how are you able to compensate for them?

Would you be interested in a guest post on my blog the weekend of Nov 21-22? I'm going out of town and would like to have posts from different perspectives those days.

Jeff Deutsch said...

Hello Corrie,

Requests for money are a serious red flag. Anyone can solicit you for money, and it could very easily be fraudulent.

That's why generally people are extremely uncomfortable even to hear someone talk about, say, getting by on cheese sandwiches and milk or not going to the doctor because of lack of money.

That suggests begging, very thinly disguised. People can take advantage of others' pity and sympathy that way.

Your questions go to the root of what make me what I am. I'm not sure how many people will read something that extensive in the comments. I'll drop you a line at your Profile address, and we'll also discuss guest posting...which I would love to do for you.

Feel free to go to my Profile and do the same, of course. Meanwhile, have a great weekend, Corrie!

Jeff Deutsch

Anonymous said...

One hopes that Tiffany Cheng and Hannah Wiberg do not do this sort of thing ever again, and that — for the sake of Tiffany Cheng's and Hannah Wiberg's careers — Tiffany Cheng's and Hannah Wiberg's prospective employers in the future do not search for Tiffany Cheng's and Hannah Wiberg's names on the Internet.

Michael Powers said...

Tiffany Cheng is a friend and I have the feeling that, in any case, she was simply adhering to the policies laid down at some point by her professor and department chair rather than intentionally misleading you from the outset. Knowing her, purposefully misleading someone would be difficult for me to envision. Whatever happened, I'm sorry that you felt dissatisfied with the way matters turned out but I can't picture Cheng intentionally misleading someone from the outset in a situation like this.

Jeff Deutsch said...

Hello Mr. Powers,

I'll be the first to admit that I don't know Ms. Cheng even close to as well as you do, if you'll admit that you don't know this situation close to as well as I do.

That said, I'll be more than happy to fill you in. Just drop me a line and I'll send you a copy of all related correspondence.

Wrt policy, I may not have made myself clear. The issue here is not whether Ms. Cheng could have provided me with a written copy. The issue here is her agreeing to my participation - and to my expending a good deal of time and effort and discussing some of my personal things - after (1) I had made it crystal clear that as a condition, I would need a written copy and (2) her professor had made it crystal clear that she couldn't provide one because the project would contain no written words.

(As I also mentioned, her partner Ms. Wiberg also specifically agreed to send me a written copy.)

After I asked for a copy once they had given their presentation, Ms. Cheng told me for the first time that it would not be possible, starting with: "So perhaps the project wasn't explained to you as well as we would have liked." That line limps off my screen on crutches.

Matters did not "turn out" that way - both Ms. Cheng and Ms. Wiberg made them so by acting dishonestly. The problem is not my feeling dissatisfied - I feel quite a bit worse than dissatisfied because they lied, by commission and omission.

Bottom line: If a research subject sets a condition for participating that you can't meet for whatever reason, the only responsible course of action is to immediately let them know that, and then see if they still want to proceed. Professors', department chairs' and for that matter colleges' policies definitely need to reinforce that, if they don't already.

Thank you for stopping by and taking the time to comment, Mr. Powers. Please let me know if there's anything I can clarify further.