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elt27
Regular Member


Date Joined Jan 2009
Total Posts : 35
   Posted 3/10/2009 11:07 PM (GMT -6)   
Hi everyone,

This is very off topic, but we were talking about ethics in my psychology class yesterday, and this question was given to us by the tutor:

A psychologist who conducts qualitative research on social support and major life stresses is interested in how parents cope with the death of a child. He decides to research the use of Internet sources of support. Posing as a parent who has recently lost a child, he subscribes to several listservs and participates in discussions in several chat rooms. He prints postings and discussions for his data analyses and quotes from theses transcripts in his publications. Whatt ethical concerns exist? What additional issues arise if the psychologist harvests the lists, not as a participant, but by accessing archives?

The situation is a little different, but I just wondered what would be your reactions if something similar happened on this forum? Like if a psychologist wanted to know how people coped with long term illness with the support of the internet
Diagnosed with Ulcerative Colitis December 2008
Treating with:
-Prednisone (11mg - tapering (slowly...) from 40mg)
-Pentasa x8 a day
-Pentasa enema once daily
Also taking Iron supplements and Multi-vitamins


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/11/2009 12:13 AM (GMT -6)   
I would first give the therapist kudos for wanting to gain insight to the area of chronic illness. However, doing it sneaky-like is a little concerning. There are many theories of therapy that involve manipulation and trickery, and I, as the client, would be a little reserved with these concepts. So, as a member of the board, having someone pose as an ill individual would cause the same emotions of betrayal and other conflicting emotions.

On a personal basis I feel that just coming out and asking us to express our experiences and feelings regarding the chronic illness would give the therapist more insight than eaves dropping. : )

What degree are you working toward? BS? MS? MEd? I'm working on my MEd in Counseling with an emphasis in Marriage and Family Therapy. : ) I LOVE IT!!! : ) I've worked in the field for almost 10 yeas and am just so eager to be licensed but that is so many years away. Oh well...it's worth it!!!

You posed a wonderful question...very thought provoking!!! : )
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/11/2009 1:27 AM (GMT -6)   
I'm surprised a psychologist would pose as a parent who recently lost a child. I would feel cheated if I had lost a child and found out that one of the parents really hadn't lost a child.

Colitis is quite a different situation from having lost a child. I'm not on this forum for emotional support. I'm on it to give and receive information. The medicines that doctors in the US prescribe for Colitis (except for Probiotics) do not fix the problem of why our colons flare. So we need to find alternative treatments to fix the problem ourselves before it's too late and we end up with J-pouches. That's why I'm on this forum. To tell others what works and doesn't work for me, to find out what works and doesn't work for others, and to provide information from researching the Internet.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 3/11/2009 6:35 AM (GMT -6)   
I would say that is unethical. If s/he really wanted information from a forum, then s/he could always ask the forum moderator for permission to post questions. Whenever you do psych experiments, you HAVE to get permission from the participant (even if the experiment itself has some manipulation) and a lot of times participants are rewarded for their time, so it's definitely a rip-off on the participants' parts.
Also, how would the psychologist even be able to publish this kind of work? Most research studies are conducted from grants (which come from universities/hospitals/government), and in published studies one has has to explain how s/he ran the experiment, the actual results, cite the references, etc. How would this psychologist even be able to publish such "research"? I'm pretty sure scientific journals would be smart enough to reject "research" based on internet browsing and fully manipulating people.
 
I just don't understand how a psychologist would be able to publish the research in the first place; it would be just as unethical (if not more) if a reputable journal actually published something like this. Even as an undergraduate, when my professors explain experiments in lecture, they cite the researchers; and when I have to write research papers, we can only use original articles from approved journals.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (6 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 20 mg Prozac, VSL #3 DS, Turmeric
 


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/11/2009 9:32 AM (GMT -6)   
I feel the same way - if someone came on here posing as someone with IBD and we turn around and find out this person is a fake and just looking to get information - well I would feel very betrayed. We can not see the person behind the computer and when we come on here, bearing our souls, we expect that person on the other end of the computer to actually understand what we are going thru. We talk about sensitive issues that we don't want anyone else to know about. It would be like if that researcher was having ED problems and tried to find help and support online but turned around and found a bunch of teenagers "helping" him for a school science project. It would be that sort of betrayal. No I wouldn't like that at all.


 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 3/11/2009 12:42 PM (GMT -6)   
The ethical side of this is an entirely different story! I agree, though...when it comes to work being published there needs to be honesty and signed releases, etc. I would not appreciate a fraudulant conversation by any means.
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


nucid
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/11/2009 3:26 PM (GMT -6)   
ethical issues--privacy and breech of trust

also if the information is used for research and copied for future use there is problems with the psychologist not getting permission from individuals
Female 33 Married
diagnosed January 2009
mild pancolitis
Sulfasalazine 500mg 3X

"The Lord is my Shepherd"


elt27
Regular Member


Date Joined Jan 2009
Total Posts : 35
   Posted 3/12/2009 1:49 AM (GMT -6)   
Thanks for your feedback guys :)

I don't know if this was a real example or not, I'm guessing not (I don't think they'd be able to get the research published either, they'd have major privacy & consent issues, esspecially if they were quoting people without permission), but I immediately thought of this forum & how upset & angry I'd be if something similar happened here.

Robin - I am working towards a Science undergrad (BSc in New Zealand) at the moment - maybe going towards something in mental health but I'm not quite sure yet, I'm only in my second year. Counseling would be cool - bet you have to have loads of patience though :)
Diagnosed with Ulcerative Colitis December 2008
Treating with:
-Prednisone (11mg - tapering (slowly...) from 40mg)
-Pentasa x8 a day
-Pentasa enema once daily
Also taking Iron supplements and Multi-vitamins


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/12/2009 6:16 AM (GMT -6)   
I think I am going to be the lone dissenter here and say that I don't think I would be that upset. I see the internet as a public online forum. You don't need a member log in to just read the posts here. I see it akin to someone sitting in a coffee shop and listening to conversations. I took specific note of the fact that your researcher was doing qualitative research not quantitative. So he/she is not trying to formulate statistics etc. but rather get a broad understanding of a general problem. Qualitiatve research is almost always done covert and undercover. For mine I observed at a children's soup kitchen and also volunteered/helped. The staff knew I was a researcher and I was given permission to be there. The kids did not know. I wasn't doing this to be published but rather as part of an undergraduate class.

So, I personally, wouldn't have a problem with someone respectfully joining our forum and making observation based on what he/she reads.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 3/12/2009 6:35 AM (GMT -6)   
Fitzy, observations are fine but posing as someone who has something they don't is another story.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/12/2009 2:17 PM (GMT -6)   
I agree. I am fine with people reading our forum whether or not they have Colitis. Our forum provides extensive information for anyone who wishes to read the posts.

Posing as someone who lost a child is another thing entirely.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/12/2009 2:39 PM (GMT -6)   
Yeah, smells wrong to me too. But I agree if they were honest about their situation and interest, and asked questions or weighed in, it's like anything else submitted here, just another opinion so that would be OK.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, trying 15/20 mg. Appt 3/6 to discuss Humira, etc.   


elt27
Regular Member


Date Joined Jan 2009
Total Posts : 35
   Posted 3/12/2009 7:25 PM (GMT -6)   
If they were just observing, rather than actively participating under a pretence I wouldn't have an issue with it. But as they are using their findings in research, they then need consent before they can publish anything
Diagnosed with Ulcerative Colitis December 2008
Treating with:
-Prednisone (11mg - tapering (slowly...) from 40mg)
-Pentasa x8 a day
-Pentasa enema once daily
Also taking Iron supplements and Multi-vitamins


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 3/12/2009 10:47 PM (GMT -6)   
I would hope he/she would just be honest and explain that they are merely researching, I'm sure people (most at least) would be more than willing to share with an "outsider" the feelings they deal with due to their stresses...I don't see any reason why the people wouldn't be completely genuine and honest regardless if they were talking to someone who's researching or another sufferer.

To be honest, I think a lot of the worlds problems exsist because of lies.

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 3/13/2009 10:36 AM (GMT -6)   
Well the reason researchers don't often disclose they are doing research up front is because it can skew the results. In qualitative research I believe it is common to observe, than ask permission to publish. But, in many circumstances they don't even have to ask for permission because it was an observation in a public place (like watching people at the mall or on a street corner). I agree that posing as someone you are not could cause harm and probably would not pass an IRB. But I just wanted to explain why most researchers don't like to go out and say "hi I'm a researcher."
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 3/13/2009 2:59 PM (GMT -6)   
FitzyK23 said...
Well the reason researchers don't often disclose they are doing research up front is because it can skew the results. In qualitative research I believe it is common to observe, than ask permission to publish. But, in many circumstances they don't even have to ask for permission because it was an observation in a public place (like watching people at the mall or on a street corner). I agree that posing as someone you are not could cause harm and probably would not pass an IRB. But I just wanted to explain why most researchers don't like to go out and say "hi I'm a researcher."


The Internet is different though. Everything is open to the public. There could be researches reading this forum right now. My posts would not change just because one or some let us knew ahead of time.

I don't feel it's necessary for anyone to ask whether or not they can publish something from the posts. I wouldn't post anything on the Internet that I didn't want anyone to see, just because the Internet is so open.

Posing as someone who lost a child is different though. Perhaps the psychologist thinks he is helping others by letting them think he identifies with them. Perhaps he feels he can ask more personal questions. However, I think it is the psychologist who feels better by posing as someone who lost a child. He really needs to learn how to be honest.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06 (also have IBS)
Currently in remission

Lexapro (for stress)
Probiotics and Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: pro-inflammatory foods, HFCS, foods high in fructose, artificial sweeteners
Previous treatments: Fecal transplantation (worked), Prednisone (stopped working), Colazal (stopped working), Asacol (stopped working)

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