Discussion about community 23andMe project and funding prospective sequencing study

Enough funds solves problems.

But suppose we have the scientists agreeing right now

Do we have enough money to start researching our 23&me genes data?

To clear some things up…

The 23andMe GWAS project is entirely community-driven and comes at no cost to the community except the price of the 23andMe kit and a suggested small donation to impute.me, which is completely voluntary.

It would have taken around 1k submissions from community members to meet the expectations for a professional-level GWAS and, by its nature, 23andMe’s method only covers a small fraction of the human genome. It is slowly and gradually moving ahead with the current submissions for the sake of finding a needle in a haystack in a long-shot and because participants were told it would happen.

The admins are now contacting researchers in hopes of a high-quality full-genome sequencing of PFS patients, and other post-drug patients if at all possible. Lots of contingencies, but it will be announced once something is lined-up and funding is required. Importantly, it would require far fewer participants than a GWAS based in SNPs.

So what’s the barrier that prevents us from using the better tool?

Scientists interested?

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Yes. A scientist(s) with the interest, time, capability, and general willingness is needed. From my understanding of the process, an agreement regarding a reasonably cost-effective protocol that fullfils our requirements and is within their lab’s capabilities will be sorted out between them and our liaisons among the staff. Then focus can be shifted toward funding. That’s why survey completions are still important. It helps demonstrate a need for research and define the characteristics of what is being researched.

Sure but my conversations with @awor revealed that we still have a funding problem. 300k at the least to do the next study on genes. if we shift focus on funding afterwards, then it would take another long time to figure that out. funding is a stressful process, generally and we would be shooting ourselves in the foot to not focus on that

And interest from scientists itself can be solved with funding

If a scientist has the skills but doesn’t have the interest to help us, he would be singing a different tune if we offer him 2x-3x the normal rate. He would agree to all the terms we put

Discussion moved from here to prevent overshadowing AnnaNim’s story about her son’s troubles with PAS.

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I’m not sure that is wise beyond throwing excess money away that we don’t have. An ethical scientist should be wiling to accept a fair deal to perform research that is justified by its merit and not how much money is thrown at them.

What is a surprise to me is the cost of a sequencing study, but I was basing that on the current cost of consumer-grade sequencing, without the necessary analysis.

The best thing I can think of to do at the moment is sit on some funds until a research opportunity that you feel is worth your donations is announced. There have been some peripheral efforts made by members of the staff and members of the wider community to gain interest of outside funding sources, but none have yielded anything yet AFAIK.

In addition a research protocol will need to be proposed prior to even thinking about applying for grants.

Bro I’m not saying it’s wise, and I understand what you’re saying here.

What I am saying is, a Systematic focus on fundraising solves a lot of friction issues of time.

As for scientists being ethical, personally, and I don’t want to get into an ideological debate here so apologies, we can argue that a scientist should do this and that but at the end of the day, the world operates differently.

We should acknowledge the reality and use it to our own benefits, or else nothing would ever happen.

In the business world, the best product doesn’t Always win, it’s largely a function of relationship and connections. It’s the same here.

A behind the scenes look at the most successful foundations and non profits reveals a systematic effort on fundraising.