61–70 of 155 posts
The data is anonymized, who cares? Good for 23andMe. We could learn very important things from that data in aggregate. We need more aggregated data in healthcare.
What do you mean "anonymized"? It's your DNA, it basically is you . Much more than your name, email address, or whatever you consider de-anonimization.
This sort of data is exactly what I would not want to entrust to any organisation in the midst of all of the leaks and hacks we are seeing in the news. Let alone having them sell it legally to god knows who... I remember reading about a hack/leak of, I think around 20,000 people's fingerprint data from the US government, and thinking to myself about the consequences of this biological data falling into the wrong hand…
My entire genome is publicly available through Harvard's Personal Genome Project. I weighed the pros and cons, and settled on helping contribute to progress was more important than my fear of the unknown future.
My concern is for people who don't want that info to be made public
Earlier quoted context omitted.
What do you mean "anonymized"? It's your DNA, it basically is you . Much more than your name, email address, or whatever you consider de-anonimization.
It's not you until you tie it to your identity. I leave "DNA" all over; people cannot match it to me unless they have an existing sample that is definitely from me.
http://www.bbc.co.uk/news/uk-england-somerset-36245888
A man killed a girl. His DNA was gathered at the scene. 26 years later his daughter committed a minor crime, and had her DNA taken as part of her arrest, which led them back to him.
Earlier quoted context omitted.
I don't feel particularly happy seeing a private profit oriented corporation having the DNA data and the results of analysis for millions of people and establishing a market dealing with this data. In the end it's your life, your defects that could be on sale and determine your worth in a capitalist society. This is scary because you fate is determined by your birth and some algorithmus that may or may not be correct…
ADA already 'prevents' job based discrimination based on DNA.* https://www.ada.gov/ An employer buying DNA on potential job candidates is opening themselves up to a world of litigation for little real gain. Similarly, health insurance may no longer discriminate based on prior health conditions due to the dreaded 'Obama Care'. We can debate if that's enough, or if these things should be rolled back. However, at a prac…
So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data…
It's fairly obvious by now that 23andme is just a collector of data, not a source of useful research or actual results. The best bit: you pay to give them your data. In that sense Google and Facebook are more fair, they give a free service and you pay with your data. For their customers (the ones who give them samples) 23andme is expensive infotainment, which will worse case lead to a whole pile of un-necessary tests…
As a customer, I'm happy with what I got:
(1) Fairly high-confidence data about known "big" inherited conditions. This was useful when my wife and I decided to have a child - there were several things we could safely rule out screening for. No surprises, but "no surprises" was what we were looking for. :)
(2) lower-confidence data for less-substantiated issues (who knew? I'm a fair bit more likely to get venous thromboembolism than average. So now I take more walks up & down the aisle when I'm on an airplane.). Is this life-changing or even particularly important? Nah. But on the other hand, it costs me nothing - and probably makes me happier - to change my behavior to wiggle around more. :)
(3) Some infotainment, primarily in the ancestry information. It was interesting.
(4)a copy of my SNPs that I store locally and may someday upload to another analysis service.
I'd suggest that you instead read this well thought out (and rather complete) paper about the biomedical ethics at play within 23andMe's two-sided market business model.
(no paywall to download the paper) https://bmcmedethics.biomedcentral.com/articles/10.1186/s129...
So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data…
The 23andMe data is amazingly useful for academic research too. I am familiar with a study (but not involved), soon to be published, that used their data to identify genetic variants responsible for a particular problem with pregnancy. The price was phenomenally lower than a more typical genome wide association study (GWAS) of which there are several publicly funded efforts. The results are much cleaner than previous…
Say we have a drug we think works in a sliver of patients with muscular dystroph; we can either go screen tons of diagnosed patients to find the cohort we think will respond, or we can go ask 23andMe to send some patients with the required genetic profile our way.
So on one side journalists lament lack of new drug development & just the shoddy state of healthcare tech, while as soon as any new data that can potentially unlock new drug targets (23andMe) or provider better support (Google DeepMind Health) is introduced, Such efforts are quickly demonized with spread of Fear, Uncertainty and Doubt. Rather than asking important questions such as at which level the "aggregate" data…