Thank you for participating! Co-founder and CSO here. Thanks for the feedback regarding the website, we're in the process of updating the page to improve its layout.
We absolutely will not be selling your microbiome data without your consent, and it's something the team and I are quite adamant about. We also will NOT be selling or using any of your personal genetic data without consent. Any analysis and discovery will be on completely de-identified data, and will go toward our goal of improving health care.
Thank you for supporting us, and we hope that the insights we provide in the early access may be valuable to you!
I totally agree but I’m excited for some recent initiatives to fix this. https://www.researchallofus.org/ This research project is open even to at home scientists although I think some of the genomic data may reasonably not be as open as other parts.
I'm not hear to defend uBiome. That being said, have you ever had to fill out a vendor survey? There are some seriously confidential asks in there. Sometimes I punt on information I don't want to and shouldn't have to disclose, and sometimes I just make up crazy numbers to fill in.
This exists and has been used successfully in a number of large consortia, like the Cancer Genome Atlas. It essentially says that the data goes live immediately, but the researchers who generated the data have exclusive publishing rights for 6 months from that date. After that, it's fair game for anyone.
>They do, given that you’d have been informed of that before you provided your consent by opting in to Rally data crowdsourcing.
I haven't tried registering for the study, but I note that an FAQ answer is not enough. Users cannot be expected to search for the FAQ. This needs to be mentioned in the consent form, and not done implicitly 'by opting in' like corporations do.
>Kind of nice that it’d be in the hands of Mozilla, Princeton University, other trusted research partners, and the open web, isn’t it?
The 'open web' is a bit of a nebulous concept, and the CA data was supposedly in the hands of a data scientist at the University of Cambridge.
From http://www.humanconnectomeproject.org/data/ - "You are asked to read and agree to the terms in the HCP Data Use Agreement and provide some basic information about your research."
This seems pretty normal from my experience with research data sets. Note that this is being released to the scientific research community, not the public at large.
1. The deletion of published data is thankfully not something that commonly happens, but it is not against the rules of the NCBI database. Scientists who deposit their data into the database have the right to ask for that data to be taken down even if it has been published. That's why there is a concern that some scientists may have used this mechanism to delete original data with early Covid-19 sequences in it. Some scientists have called for NCBI to please allow them to search through deleted or suppressed data for these early Covid-19 sequences, but they have not been granted permission. Please see Vanity Fair's report on this: https://www.vanityfair.com/news/2022/03/the-virus-hunting-no...
2. I have seen an archived version of that job posting but, like you said, it didn't surprise me that they were looking for more coronavirologists - the Wuhan Institute of Virology does have one of the world's largest (if not the largest) bat coronavirus hunting programs. The website being revamped kind of goes into speculative territory - maybe it was just time to upgrade the site or maybe they did it to avoid negative attention. The more disturbing thing to me is that they did not share their pathogen database (taken offline in Sep 2019) despite a pandemic happening. The database was meant to help inform pandemic response, but when a real pandemic happened, the database could not be found anywhere. None of their collaborators, including in the US, have seemed to be able to provide a copy.
I'll just note that I have no problem with all this information being public for health research. I'd take privacy hits all day long in return for better cures, health, and longevity.
Nice question! The main thing to keep in mind here is that unlike companies such as 23andMe who collect dead saliva cells, we are able to preserve living cells which are far more valuable for drug discovery efforts and therapeutic development. We are currently working with two labs at Harvard and one at Stanford to advance our therapeutic and disease modeling pipeline. We're making tech that will allow us to model complex diseases completely in-vitro as well as therapies to replace damaged or lost tissue!
However, I want to make it clear that our focus will always be towards our users and their privacy. Users will always be given the choice if they want to contribute their sample to our research initiatives. Samples will not automatically be used for research unless there is explicit consent. Users will also have the ability to remove their sample from our research pipeline at any time. We take privacy and consent extremely seriously.
Additionally, we are currently setting up infrastructure that will allow users to get rewarded if they do contribute their sample to research. We believe it is our right to reward those that contribute to our research efforts. Stay tuned for details.
it was in the name of science, of course! i'm pleasantly surprised to see some of the discussions on here, concerning copyright and health data ownership. =]
i was aware of the privacy implications. i briefly looked at the data in osirix that i would be exposing and decided that it was worth it.
To those saying the data should be open in the pursuit of truth, damn the consequences, please consider this scenario:
Researchers come to your community and tell everybody they're studying genetic diseases. Their research will provide comfort to those who suffer. Sounds great, so you all hand over your DNA/ec to these researchers. Then a few years later, using that same data, researchers publish studies saying that your people are genetically stupid. That you're a bunch of subhumans generally unqualified for anything but menial labor. How does that make you feel the next time researchers come around asking for more data?
You'll tell them to fuck off, that's what you'd do. Why would you consent to research that demeans and degrades you and your people? And because your community now has an adversarial relationship with scientific research, that initial promise of research helping people goes out the window too.
If using this sort of data as a weapon against others is permitted, you harm not only the people you collected the data from, but your own ability to collect data from them again in the future.
Hey guys, thanks for all the comments! I realized that it was not an ethical idea to post, so I decided to take it down. I did not get a cease and desist, but I would appreciate if you could refrain from reposting it.
If you are interested in seeing some of my other (more ethical) work, check out Delphus [1], an open research study management platform which I am working on at my new startup ;)
For all the privacy concerns, I'd love to be able to opt to waive them / opt in to groups of people with similar results and exchange notes / personal findings.
And would love to contribute to medical research in a way that's less onerous on researchers.
And of course there'd be some misunderstandings - consumer beware...
We absolutely will not be selling your microbiome data without your consent, and it's something the team and I are quite adamant about. We also will NOT be selling or using any of your personal genetic data without consent. Any analysis and discovery will be on completely de-identified data, and will go toward our goal of improving health care.
Thank you for supporting us, and we hope that the insights we provide in the early access may be valuable to you!
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