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Stem Cell Treatments: A quick guide for medical practitioners and FAQ: a resource for patients submission

ID: 
8
This submission reflects the views of
Organisation Name: 
Plunkett Centre for Ethics.
Personal Details
Questions
3. Does the document contain relevant information? If not, which sections do you consider to be irrelevant?: 

Congratulations to NHMRC for this initiative. However, the 'quick guide for medical practitioners' is a much better document than is the FAQ, a resource for patients.  The quick guide for doctors really says what needs to be said to would-be patients. The FAQ document is not, in my view,  worded strongly enough to provide real guidance to would-be patients who go looking on the internet and do not/cannot distinguish between snake oil salesmen and researchers at reputable research institutions.Nor does it say enough to protect them from well-meaning but over-promising researchers at the latter institutions.

4. Does the document exclude any important information that would be useful to medical practitioners or patients?: 

I don't think that what is said in the FAQ is  persuasive enough. 

1 In the 'resource for patients' you talk about stem cell treatments.  But. as you have said, there is only one which is proven, standard practice.  So use of the word 'treatment' is misleading.  At best much of what is advertised on line is a 'clinical trial', at worst it is 'snake oil salesmen' stuff.  So suggest the use scare quotes around most of your uses of the word 'treatments'.

2 There is much misunderstanding of clinical trials... you distinguish them nicely, but I suggest that you make it clearer that the point of pre-clinical and phase 1 trials is not to provide a therapy for the participants.  Your readers could work that out for themselves, but they would have to be attentive to do so.  And sick people are often not attentive, or if they are their attentiveness is compromised by their illness. Many would-be patients have inadequate access to good information.  They are often confused about the innovative status of stem cell interventions.  And many suffer from cognitive impairments.  And many would-be patients are impaired by the psycholgical toll of their plight, their thinking impaired by powerful disease-related emotions.

3  In addition, the thinking of clinician researchers can itself be flawed. The documents don't take that into account sufficiently.   See Scott et al (2010) The language of hope: therapeutic intent in stem cell clinical trials.  AJOB Primary Research, 1 (3) : 4-11.  See also: Caplan and Tsou (2010).  Touting stem cells: we have seen the enemy and he is us.  AJOB, Primary Research, 1. (3). 1-3

5. How could this information best be disseminated to patients and medical practitioners?: 

Websites, patients support groups, gps rooms, rooms of relevant specialists, medical research institutes

Specific Comments
Specific Comments: 
Stem Cell Treatments - Q6

 Add: advise your patients about the difficulties involved in follow up care for patients who have sought interventions overseas.

 

 

Frequently Asked Questions - Q2

Put the word 'treatments' in scare quotes.

Add something to the effect that, if you go overseas to get 'treated', it may not be possible for your doctor back here in Australia to give you proper follow up care, etc, because your doctor may not be able to find out how you have been 'treated' overseas, etc.

Suggest that would-be patients check out what they find on internet etc with what patient support groups say.

All other stem cell interventions are either experimental or unproven.

That is:

Don't call them 'treatments'.

Page reviewed: 7 February, 2014