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DNA debate - August issue

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DNA debate - August issue

Postby Brypye » Tue Oct 15, 2019 8:46 pm

I'm catching up on the August issue, and I read a letter from someone who warned how pharmaceutical companies could benefit from our DNA.

This is an interesting debate, and I'm not totally sure what the answer is. One thing I would say is that there is a general feeling of unease about giving any sort of money or information to pharmaceutical companies. I appreciate that they may run differently in different countries, but ask yourself this: Are you happy to give money to charities, to try and develop treatments and cures for diseases? Well who do you think is going to produce the final drug or treatment? Partnerships with these companies are vital.

Only today there was yet another publication released courtesy of data from 23 and me, and you can google 23 and me publications/research and see all the publications they've been involved in.

I think data breaches should be taken extremely seriously, and I understand that there could be risks. However, I would estimate that the scientific advances we've made through sharing our DNA on sites such as 23 and me and Ancestry have far outweighed any data breaches, or potential breaches (I haven't investigated fully, but I am unaware of any breaches with these kinds of tests which have led to anyone being directly disadvantaged medically or financially?).

At the end of the day, everyone has the right to make a decision about this, whether it's to take a test or not. I think both sides are totally justified. I'd just like to demonstrate some of the positives, and represent the scientists :)
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Re: DNA debate - August issue

Postby junkers » Tue Oct 15, 2019 9:33 pm

I agree that everyone has the right to say yes or no. However the use of DNA tests could lead to the general policy of eugenics, the same policy later carried on by the Nazis and previously practised in this country in the 1920s and 1930s, as well as in countries like Sweden. There is a complete difference between giving to charities to help treat illness, which I do, and giving people's DNA to pharmaceutical companies who in general are interested in making money and charging the NHS outrageous prices that stop people being treated. A data breach cannot be reversed and when people could be denied life insurance for example because of a hereditary illness identified by the tests.
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Re: DNA debate - August issue

Postby HardWork » Tue Oct 15, 2019 9:51 pm

That is why it is important to read the small print. As far as I recall, Ancestry automatically used to supply data for medical research as part of their T & Cs which is one of the reasons I never tested with them. They have since changed this to an opt-in. That may possibly be due to data protections introduced by the EU. Family Tree DNA, as far as I am aware do not utilise DNA in this way either. I've not used other companies so cannot comment on their practices.
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Re: DNA debate - August issue

Postby AdrianB38 » Tue Oct 15, 2019 9:56 pm

I do think that DNA going to medical research should be subject to informed consent. Once that has been genuinely obtained, I don't have a problem with medical researchers, including pharmaceutical companies, using it. Fear of consequences should not result in an absolute block. There are diseases out there that need this sort of research and invoking the spectre of eugenics can lead to panic blocks on whole areas of research. That's not to deny the need for clear structures that can guard against misuse - those structures, like informed consent, are absolutely crucial. The alternative is that whole areas of research get blocked off except when sanctioned by the great and the good, who probably wouldn't recognize a scientific method if they saw one but will take every opportunity to talk themselves up. Hmm. That last bit almost turned into a rant. But try reading round the political aspects of trying to do research into DNA from ancient bones.

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Re: DNA debate - August issue

Postby Brypye » Tue Oct 15, 2019 10:01 pm

I'd like to think we've come a long way since the Nazis! I know how strict ethics procedures are for research, largely because of what happened with the Nazis. I guess my point is, there's a lot of fear about things I'm not entirely sure have actually ever happened, whereas many advances in science HAVE actually already happened which could save lives. I am also encouraged by the recent strict rules about GDPR, so if someone did get hold of data for insurance purposes for example, they would be acting illegally.

I totally agree that there are some companies who charge the NHS too much for drugs, and I know they have to make money to be sustainable, but I wouldn't be surprised if there are people at the top getting huge sums of money (as there are in most industries). However, we do still need to work with them and make them partners in research. They are a bit of a grey area, I don't think you could say they're all great or they're all to be avoided either :/
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Re: DNA debate - August issue

Postby AdrianB38 » Tue Oct 15, 2019 10:02 pm

HardWork wrote:That is why it is important to read the small print...

Exactly. And getting informed consent needs to be more than an opt out buried 16 pages into the Ts & Cs. Having said that, we shouldn't blame people for not seeing the future several years ago. Our requirements evolve....



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Re: DNA debate - August issue

Postby Brypye » Tue Oct 15, 2019 10:03 pm

Here, here AdrianB38!
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Re: DNA debate - August issue

Postby meekhcs » Wed Oct 16, 2019 2:16 am

So i wrote a long reply to this topic only to find that when i pressed submit I had been logged out of the Forum. Silly me I should have saved the draft before trying to send it. I apologise for the length of reply and the rant but as you read you will understand!!

So here goes for a second time.

DNA studies will become increasingly important as we look to find more and more cures and treatments for illnesses that we are trying to iradicate, and perhaps even more importantly why certain people are more susceptible to certain illnesses than others. I feel theses studies need to be undertaken by research companies who have the knowledge to put these studies to proper use, and who are subjected to strict regulatory governance.

Whilst I do not doubt that The Family History sites that have entered the DNA market have provided answers for lots of people searching for Family members etc I do not think they have the knowledge to deal with DNA safely.

In my opinion Family History sites such as Ancestry should never have been allowed to enter the DNA market. It is just a means to an end for them, ie growing their business. Ancestry are merely a conduit between the American DNA testing site they use and their customers. I question how safe these sites are when it comes to protecting customers DNA. I know there is an opt out clause in cases but do these FH sites re have full control over every DNA test frombeginning to end?

Because I know someone who is trying to find answers through DNA, who went through a Bona Fide testing site without results, we decided to use Ancestry because it now has the largest data base.

The experience so far has been a nightmare. I discovered today, and this has been going on since 30th September, that at that time there was yet another Ancestry glitch and kits were sent out to the wrong addresses. Ancestry keep a record on file of any address that that is ever linked to a subscription. Because I had moved it had my old and new address on it's system, but only my new address showed up to me.

When i made the order on the 30th and received the email confirming my order I noticed that the delivery address they were intending to use was my OLD address. I phone immediately and was assured it would be rectified. It wasn't! Two more phonecalls resulted in my receiving 3 kits and I was instructed to use one and keep the other two in case of problems. We activated a kit and returned the sample 3rd October. It was received in Dublin, registered on the system and sent to the US for analysis.

This week it all blew up in my face. Suddenly Ancestry said they could not continue to use the sample as the wrong kit had been activated. They could offer no explanations as to why this had happened,despite my logic that if the kit had activated it must be usable. Somewhere along the way it was de activated! I have made 5 calls in all to Ancestry and four have given me wrong info. I wait in judgement on the 5th. We have to start the whole process again and are now waiting for a new kit.

To be fair Ancestry have refunded the cost on my original order, are sending the new kit foc, and have offered 6 months free subscription as an apology, but this is hardly the point.

Their staff appear clueless and seem incapable of dealing with anything outside the norm. They will not pass you to a supervisor or manager, do they even exist? Why do they keep old info on their records? Did they destroy the sample they were suddenly unable to use?

So I return to my original point I don't think Family History sites should be allowed tohandle DNA. It is not safe.

Rant over, save draft, and then submit!

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