Tag: 23andme

Public Service Internet monthly newsletter (Oct 2024)

Your friends will be there for you, your work won't

We live in incredible times with such possibilities that is clear. Although its easily dismissed while seeing Mozilla closing their Mastodon instance, the internet archive no longer allowed to lend ebooks and the endless saga of 23 and me.

To quote Buckminster Fuller “You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete.“

You are seeing aspects of this with coffee pod recycling for real, The possible return of concentrated solar power plants and the formulation of the social web foundation.

Real stories about Facewatch in the UK

Ian thinks: Although put together by big brotherwatch, this video shows the people caught up in the facewatch surveillance in the UK. Its hard to watch but a good reminder of the on going problems.

What does Fish have to do with online privacy?

Ian thinks: Based around the paper written by Barath Raghavan and Bruce Schneier. NBTV, puts the paper into focus through many clear examples and comparisons. Its clear privacy has been misjudged and we are all paying for this.

Cory shouts Disenshittify or die at Defcon24, and in text.

Ian thinks: Cory’s follow up to last years talk, is another great reminder of the horrible state of the market, internet and society. You can’t help but raise a fist to some of points about Spotify, Google, Meta, etc. But the re-examination of the words; if you are not paying for the product you are the product. Is a very important call.

Will you host your data on Lidl’s cloud service?

Ian thinks: Although it sounds ridiculous on first glance, This is an example of the big difference between the EU data space and the Silicon Valley space. There is no way Lidl would even consider this an option outside the EU, but the EU laws makes a somewhat trusted brand viable for this type of pivot.

The importance of friendship, loneliness and vulnerability

Ian thinks: This conversation between Simon Sinek & Trevor Noah strikes a chord with some of the large societal problems. This has so much from  questions about friendship to the importance of cultivating them into something strong and lifelong. Just at a time when loneliness is rising, I felt this a important one to share.

Tokyo creates its own dating app, against the likes of Match

Ian thinks: Match group currently has 50% of the market, but the Japanese government is about to launch their own as the population decline is that serious. Its worth noting Japan has tried many things including paying bars/clubs to put on single nights for the last 10 years, making this decision not something made lightly.

Detecting AI generated like a pro?

Ian thinks: We are all facing a barrage of AI generated images and videos, it is easy to be distracted or be tricked and there is no shame to this. With some of these tips, it will help weed out 90% of the typical AI slop.

Digital legacy a change is due

Ian thinks: Digital legacy is something we rarely think about but really should. There is a number of interesting developments from research into digital legacy to UK justice beta testing digital LPAs. This podcast gives a real sense of the importance of this all.

Grief and digital grief

Ian thinks: Following the previous link, this video from the Guardian, explores both sides of the divide around using AI technology for people who die. Its striking as these homegrown solutions are being commercialised and rolled out with little to no care for the people on both sides

Find the original here and the archive here

Public Service Internet monthly newsletter (May 2024)

Undersea internet cablesWe live in incredible times with such possibilities that is clear. Although its easily dismissed while understanding the risks of wearable technology, Discord public messages sold for profit and seeing the Investigatory Powers Bill approved.

To quote Buckminster Fuller “You never change things by fighting the existing reality. To change something, build a new model that makes the existing model obsolete.“

You are seeing aspects of this with America finally getting a online privacy bill. Bitwarden and Proton giving away passkey support to all users including the non-paying ones. Finally Fairphone shows up the consumer tech industry with new levels of sustainability.

The long con of the XZ backdoor

Ian thinks: This video really explains whats known about the XZ backdoor and the Microsoft employee who saved so many in the industry from a unthinkable backdoor. The social engineering side is also fascinating and chilling.

Encryption in the age of surveillance

Ian thinks: This lightening talk is a harsh reminder of the current state of encryption law in the UK. Whittaker’s talk is aimed at the EU, which are facing similar legal objections around encryption and privacy,

Fast fashion under the limelight

Ian thinks: Not tech as such but related as I was looking at larger effects of social media on our collective conscious.

Enshitification explained in a way we can all understand

Ian thinks: When a very popular youtuber covers a issue such as enshitification, you know its hit the mainstream (plus it was word of the year last year). This is perfect to share with many other people.

Who looks after those undersea cables?

Ian think: The Verge’s piece about the importance and health of those super important internet cables is a good read and reminder of how important the physical cables are to so many.

Are we at Peak AI and can you say AI bubble?

Ian thinks: Zittrain’s recent podcasts looking at AI is worth your time. Although he use the metric of revenue & profit most of the time, there is parts across both podcasts asking about the public benefit. There is also a clear question about the problem of booms and bubbles.

Why men shouldn’t control AI?

Ian thinks: Although a very clicky headline, there are some really good points raised about the fragile egos of some men and the clear pointers to the lack of imagination and cooperation in a patriarchy. Read with a open mind.

Fediverse gets new Threads

Ian thinks: In the latest dot social podcast, Mike Cue is joined by Meta employees to talk about joining the fediverse. Techcrunch have a good cover of the conversation, Regardless of Meta, its clear the fediverse isn’t something which can be ignored.

23andMe? A welcomed update

Ian thinks: I have always been concerned about DNA testing, especially in the tech space. In this update the Freakonomics play an existing interview and update it with the very public downfall. I can’t help but think public health was ignored from the start.

You may know Transhumanism as another name?

Ian thinks: To understand Transhumanism is to understand the almost unwritten motivation of so much of the tech billionaires. Recently renamed techno-optimism, longtermism and even effective altruism, it crops up so much. Where better to listen to a critical view of it than on tech won’t save us?

Find the archive here

23and…everybody

I saw a tweet which included the unstoppable Aral about 23andMe

You may remember I wrote about my thoughts about joining up and then a follow up.

Well…. as per the tweet

Today, 23andMe announced what Forbes reports is only the first of ten deals with big biotech companies: Genentech will pay up to $60 million for access to 23andMe’s data to study Parkinson’s. You think 23andMe was about selling fun DNA spit tests for $99 a pop? Nope, it’s been about selling your data all along.

Since 23andMe started in 2006, it’s convinced 800,000 customers to hand over their DNA, one vial of spit at a time. Personal DNA reports are the consumer-facing side of the business, and that’s the one we’re most familiar with. It all seems friendly and fun with a candy-colored logo and quirky reports that include the genetic variant for asparagus pee.

Its not even shocking…

We all (well some of us) knew this was coming. It does make me wonder how far companies such as 23andme will go?

I started listening to Andrew Keen on Triangulation today before leaving for work. I only got 10-15mins through when I found myself agreeing with Andrew on something (and it really hurts me to say so).

He mentioned something about Uber and the value of these services. 23andme I imagine would be added to the example pile too.

Do You Really Want to Know Your Future?

IMG_0908

I was listening to the Freakonomics podcast today and heard a interesting piece which reflects my thoughts on 23 and Me…

Stephen Dubner talks to people who have a rare but terribly destructive neurological disease Huntington’s. And ask if children of the disease if given the opportunity would want to know if they were also at high risk or not.

As Stephen says…

If you could take a test that could foretell your future, at least your medical future, would you? Would it be valuable for you to know if something bad was going to happen? Or would it be more valuable to not know?

My post about 23 and Me, isn’t anywhere near like this question but has similar answers…

As one of the people asked on the podcast said…

I think this is something that is horrific information, very, very powerful information. If you’re somebody who has a 50 percent risk as most people at risk around the world there is nothing, nothing whatsoever that you can do that makes any difference whatsoever, nothing, nothing, nothing, nothing, nothing, nothing. There’s no treatment you can take. There’s nothing to forestall it. And if we actually had something that made a difference in treatment, I think that would make a huge difference.

Or another part…

DUBNER: Well here’s what I wanted to ask you. I mean, we do know that economists think about the world differently and we appreciate that, especially on this program. I mean, we love that. On the other hand, there is this assumption among economists and within economics that people do value information and that they eschew or try to get rid of uncertainty, because economists see that uncertainty brings about bad things. But I’m just curious if the rather strong evidence that so many people embrace uncertainty in their own private lives may have changed or nuanced a little bit the way that you as an economist think about the downsides of uncertainty and maybe there is something to be said for it.

OSTER: No, absolutely I think that I have come to think that in fact for a much larger share of the population than I would have expected it seems like this preference for living with uncertainty is quite strong. And I would have said some people have that preference. It seems surprising to learn that basically, at least in this population, it’s like the vast majority of people appear to be much more interested in living with uncertainty, which isn’t something that I think would be true for me, and I would not have thought would be true for some many people.

DUBNER: And it doesn’t weaken your preference for certainty at all.

OSTER: No, I don’t think so.

The answer is very tricky and not a simple one, but we already knew that…

Better to know or to live in blissful ignorance?

23andme box

Following my brush with death I have taken a much deeper look at my family genes.

But one of the ultimate ways to know more is by signing up to 23 and me.

Although the idea freaks most people out, when you’ve been so close to death theres really little which can freak you out. So I have been considering the process quite a lot and looking through there material and some of the backstory of 23 and me.

Besides my thoughts of a world like Gattaca, I’m wondering if its better to know or live in a world of blissful ignorance? Although I do have to say blissful ignorance is part of the reason why I ended up in hospital. I do however wonder about 23 and me’s terms of conditions. There privacy statement is interesting too…

You may learn information about yourself that you do not anticipate. This information may evoke strong emotions and has the potential to alter your life and worldview. You may discover things about yourself that trouble you and that you may not have the ability to control or change (e.g., your father is not genetically your father, surprising facts related to your ancestry, or that someone with your genotype may have a higher than average chance of developing a specific condition or disease). These outcomes could have social, legal, or economic implications.

Genetic Information that you choose to share with your physician or other health care provider may become part of your medical record and through that route be accessible to other health care providers and/or insurance companies in the future. Genetic Information that you share with family, friends or employers may be used against your interests. Even if you share Genetic Information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.

We do not sell, lease, or rent your individual-level Personal Information without your explicit consent. As a general rule, 23andMe will not disclose your individual-level Personal Information to any third party, except under the following circumstances:

  • Partners or service providers (e.g. credit card processors or our contracted genotyping laboratory) process and/or store the information in order to help us provide, understand or improve 23andMe’s Services.
  • If you have consented for research, research contractors may access your individual-level Genetic and Self-Reported Information onsite at 23andMe’s offices for the purpose of scientific research, provided that all such research contractors will be supervised by 23andMe and subject to 23andMe’s access rules and guidelines.
  • If you have consented to use of your individual-level data in the Research Portal feature, qualified researchers (who must comply with certain requirements) may access your individual-level Genetic and/or Self-Reported Information for the purpose of scientific research, which could lead to commercial use.
  • We are required to do so by law or we do so in coordination with regulatory authorities (see the section below titled “Information Disclosure Required By Law”).
  • You have provided explicit consent for us to do so.

On a whole I don’t quite feel at ease with there terms of conditions or privacy statements. 23andme is a company and that worries me. If they were a charity or something like that, I would feel a slight bit better. How long will it be till they sell out on there users? You only have to look at what’s happened with Flickr to see the bizarre things that can happen.

So its not the information I’m worried about, its the way its stored and disclosed, now and into the future…