We are starting to put together the next PARKINSON'S MOVEMENT webinar. Our subject is the genetics of PD and we will look at those genes which make people more or less likely to get PD or to have a more aggressive or benign form.
Current thinking suggests a genetic component in 5-10% of cases.
In the webinar, we also want to look at the ethics and consequences of testing. How do you decide whether to be tested? what do you do with the answer? Do you tell your kids? Do they ask? Does/did it help to know?
We really would like your thoughts on this.
Written by
JonStamford
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On the subject of testing and the ethics surrounding this I suppose it depends on what culture, religious beliefs etc are involved. Who , when and what to tell your family I would suppose the same as with any other disease neurologcal or not. Individualls need information to make choices,, my comments probably not very useful but grateful for asking and for your input. Yorkshire England
"Knowledge is Power." I would like to know everything possible concerning the genetics of Parkinson's. The more I know, the better choices I can make. I also would want my family to know as much as possible, and what can be done with this knowledge. Thank you for helping PWP.
Wayne- I agree 100%...we have not come this far only to turn and ignore the possibility to take positive action in order to be proactive & possibly preventative. FYI My Dad had PD for 11 years and passed away on July 31, 2011. Thank you to all of you who help spread the awareness and positive thoughts.
If my perception of the collection of genetic material for research is correct then the identity of the donor is not retained without special permission. Assuming that the purpose of the research is to help find a cure for PD & anonymised information on age, gender & ehtnic origin is necessary for the research then I have no problem. I have already donated genetic material. My main concerns
about the use of group/population statistics relate to the history of their abuse & the corruptibility of human nature.
Regarding personal information, I am unsure about the legal implications re confidentiality of certain types of information (do some conditions have to be 'reported' to other agencies eg HIV, if so do they tell one's GP/insurance companies?). As a consenting adult I choose to know the outcome of any/all tests. I believe uncertainty to be a silent killer. In the light of this knowledge I can make an informed decision about how to use it, whom to tell & in what manner etc. However I am not forced to be told the outcomes (unless they fall into the 'reportable' categories) & what I choose to do with the information is in my control.
With only a 5 - 10% range it seems to be a mote point. I don;t have the genes but I do have PD. Having this information would not have alerted me at all/ Maybe I would have dismissed completely. I think more research needs to be done before taking the next step.
All illness is the result of a genetic consequence be it inherited or acquired. So testing becomes significant because it has the ability to detect,eliminate,prevent and potentially cure illnesses.
Its purpose to help people overcome or manage health issues specific to them as individuals. Its not about the creation of the perfect gene pool,which is were people fear its pure science may lead.
Genetic information is essential to understanding, the cause treatment and recovery or management of illness.
The genetic inheritance statistic of 5%-10% is no more or less significant than the remaining 90% with idiopathic unknown origin PD.
Perhaps because PD is increasingly being looked at as a multi faceted disease,the resultant outcome,being the same for all, makes genetic studies more important,to individual disease management especially for us.
The fact is genetic screening is available,some want it others do not.
I think we must respect those choices but strive to help people make them on the basis of educated informed choice in a rapidly advancing arena of progress.
Genetic information is not just personal,beyond your decision,there are consequences. The result is potentially predictive and can impact the family and future generations. This can be a positive or negative, outcome, hence the need for skilled council and accessible up to date educating. This has precedent it is as much of a proitity as the research need itself,without it research will be slow and obstructed by fears and pre conceived stigmas
I was diagnosed 4 years ago and went through the same process we all have. I, however, am also ADD/ADHD,and Tourettes since I was a child. I'm 70 now, so didn't know what was wrong with me until an adult. About 25 years ago I got a diagnoses for that.
When I learned I had PD I was really confused. Tourettes and PD are on the opposite ends of the Dopamine spectrum.
So, thanks to MJF and 23 and me I learned I have the LRRK2 gene. This explained some. And didn't answer much more.
Then one day, I was listening to a podcast, I don't remember whose, but it was about the gut Biome and it's relation to the brain. He spoke about colostreum, which is secreted
the first day of lactation by the mother. This feeds the Gut Biome, not the baby. If anything interrupts this process, not being breast fed, use of antibiotics, alcohol,drugs the list is endless, the babies antibodies will be compromised and all kinds of mutations can occur.
Thinking about this, two theories materialized.
12 years ago I had Diverticulitis (like apendicitis in colon) which burst resulting in a foot of colon being removed, and a resection 3 months later.
Within a year, I got terrible itching (like neuropathy but crazy itching, no pain but just hands and feet. After that pains that traveled around body. Lots of tests, nothing. Then I started falling, maybe a couple of times, and then more.
So anyway, 4 years ago I got a tremble in my hands and went for DatScan.
Now this is PURELY EMPIRiCAL ,Highly speculative and being studied in rats. I would bet that with the LRRK2 gene present, and a totally "out of gut" experience. That is how I got P.D.
I also am keen to know more about genes that may play a part in the cause /progression of the disease. I tested negative for the gene variant (LRRK2). However my father had Parkinsons. Suggestions about cause from the medical community are environmental / toxins / or simply a susceptability ( whatever this entails???). I am concerned for my children and hope that further research can unravel the mystery and hopefully hasten the path to a cure,
Testing could be to further knowledge for research or
Personal interest knowledge for self
If for research the protocols regarding confidentiality and ethics of medical research would apply.
If for personal reasons there are other factors to consider and some ethical dilemas to think through before testing
What will i do with the knowledge
How do I make sense of the results
What genetic counselling is available, provided, do I expect
What is my responsibilty to offspring, siblings, extended family regarding findings particulary when they indicate a genetic link
What are my expectations of the medical fraternity in the light of my results and are they realistic
Knowledge may be power but this knowledge may potentially leave me feeling powerless as there is no treatment yet that can change the course of my condition and in fact the resultant knowledge could do the opposite increase stress and anxiety and so exacerbate my condition. sometimes ignorance is bliss.
It is a difficult situation for those with a strong family history and decision to test would be very individual.. There is a need for a process to guide you much as pre counselling in aids /HIV testing. It would be helpful to have questions to think through when thinking about being tested. they would focus on my personal responses and my perceived responsibilities to the new information.
Lastly there is societal expectations. this is an expensive procedure. knowledge on PD and genes is still developing. What right do people have to expect testing. Who pays?
My personal thought is that Overall until there is something to offer in the way of prevention i see little point in genetic testing except for research purposes.
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