Ethical implications of the remote measurement of Parkinson's
 

Ethical implications of the remote measurement of PD

It seems to me likely that computer systems can be built that in some sense remotely measure a person's Parkinson's. By "remotely" I mean they work from a distance, without a person having to do anything and, possibly, without the knowledge and consent of the people being observed.

Such a system could use photographic, video, audio, keyboard or other data to give a person a Parkinson's score.

Once up and running, the rate at which data could be collected would be breathtaking. Thousands of people could me measured in minutes. For example, 50,000 people at a football match could be photographed; thousands of people passing through airport security could be videoed; millions of web sites could be trawled; tens of millions of telephone calls could be monitored.

Measurement offers great clinical and research benefits:
- It could lead to earlier diagnosis, which in turn would help to identify the etiology of PD;
- It could give detailed measures of progression rates, which might lead to the identification of treatments to slow progression.
- It could assess the symptomatic effect of treatments and identify which ones are most effective.

However, it raises ethical issues. For instance:
- What impact would it have on a person to out of the blue to be told they had a 50% chance of developing PD?
- Suppose you telephone an insurance company to arrange medical insurance and as you speak they analyse your voice print and find you have a 10% chance of developing Parkinson's in the next year. Could you still get insurance? What would happen to the premium?

Should work continue in this area?

I have no answers, just questions.

What do other people think?

John

Good Night John. I'm afraid the answer to your question will still be absent when you wake up. Same as the answer to the cure. Answers to hypothetical questions are only found in dreamland. Only reality is there when you waken. Reality is what we live with. You must learn to live with it and accept it as your Reality.

Sincerely,
Vicky

dreamland
 

Ummm, sorry to question reality, but some of this is already happening, and it has only just begun.

Some insurance companies, for example, routinely monitor the postings of their existing and future customers on Facebook, and other sites. One example among thousands: a woman receiving disability benefits put photos of her Florida vacation on Facebook. Her insurance benefits were cut off the next day. If you can go on vacation and go swimming, you are not disabled.
Many insurance companies will not sell you life insurance or medical insurance if you have a “pre-existing condition”, of which Parkinson is a perfect example.
If you take out health insurance before being diagnosed, suspecting that you might have it, they may ask, then how come you have been posting on a Parkinson forum, asking about early symptoms? And they often somehow have the list of avatars and the real names.
\
Now some say they can detect PD in your telephone voice.

They hate to insure the fatally injured. Same goes for hiring – why hire someone who has cramped hand-writing and who reads PD websites? Bad risk.

I have seen the future. I am not in it. That’s my reality.
Now, back to your reality.

they'll be doing DNA analysis at birth and predicting your chance of developing every possible disease sooner than later.

for pd'ers, we all benefit from the earliest diagnosis to help finding the cause which will help finding the "cure".

being a little ridiculous here, but anything increasing awareness about pd, regardless of how it might affect the yet undiagnosed, has to help. the goal is to find a "cure" and the more voters clamoring for one hopefully the sooner it will happen.

"I have seen the future. I am not in it. That’s my reality.
Now, back to your reality."

Still hypothetical. Today, tomorrow, next month, Next Year? I see myself Living for quite some time. 30+ and counting for me!

You have power to determine your reality, unlike hypothetical situations. Positive thinking may produce positive results. Negative thinking may produce negative results. I haven't seen my future. I lay no claim to seeing the future. I will die someday, that's reality. Comfort can be found even in that fact. I would not want to be the exception to the certainly of death.

Soccertese, my youngest son was angry for telling him the results of my genetic test. He has a young family and doesn't want a diagnosis of PD over his head. I again live each day to the fullest to live a meaningful life.

Last Comment on the subject. Good luck John, Bob and Soccertese.

Vicky