Episode 57 - Do No Harm

By now we are used to the idea that every action we take in the world is tracked, but what happens when that all-pervasive panopticon is turned inside each and every one of us? An explosion of personal medical technology, health programs, and terrible data practices have meant that the very records of who we are are being packaged, sold, and stolen. Our health records have become assets used to sell us out - and the dangers are only growing.

Can we regain our most intimate form of privacy? Or are we doomed to a future where the details of our body and mind are open to the highest bidder?

full transcript available

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  • 05:50 DNA and Me
  • 11:56 Corporate Wellness Programs
  • 19:31 Why might your employer want your health information?
  • 27:09 Anonymous data isn't?
  • 34:42 Mental Health Surveillance
  • 41:01 Building a nefarious infrastructure
  • 48:47 In who's hands are the keys to women's health data?
  • 57:53 Pirvacy concerns in Australia
  • 1:00:27 Benefits from central health databases?
  • 1:04:46 What can we do?

Listener Submitted Comments

From Tim:

First up, thanks for what you do, and I thought the episode was very good! I loved how you really broke down how data can be de-anonymized. I had a few minor bits of feedback though. (I guess if you want my bona fides or w/e, I have a PhD in biomedical science.) First off, in terms of storing your genetic information, it’s actually even worse than you said! Those companies don’t just store your DNA sequence digitally, they also store the spit that you paid to send them!

Secondly, the idea that if your parents have done the DNA test, then they already know everything about you, isn’t quite right. They’d know that you had a certain constrained set of possibilities, but wouldn’t have anything concrete.

Finally, the thing that prompted this email, was that you briefly said people were discovering if they were “part Native American or whatever.” To your credit you do then later say that the ancestry is very inaccurate, but I would have liked a little more acknowledgment of how these tests represent the “other side” of the US’s racist history of the Blood Quantum, which has been used to deny indigenous people the meager assistance the government does offer. The ancestry tests are empowering some white settlers to claim that they’re native (rhetorically, not legally), which is several layers of gross...

Again, thanks for the great podcast! I hope I didn’t come off as accusatory, it’s just an aspect of this that gets overlooked constantly (and probably compounded by the main news story of this weekend). As well as perpetuating the idea that only one kind of people come from one place, which is exactly how people who want a white ethno-state would like the debate to be framed.


@misc{Abha Bhattarani_2018, title={Privacy experts alarmed as Amazon moves into the health care industry}, url={https://www.washingtonpost.com/news/business/wp/2018/01/30/amazon-already-has-huge-amounts-of-our-data-what-happens-when-you-add-healthcare-to-the-mix/?noredirect=on&utm_term=.b7900dda66e1}, journal={The Washington Post}, author={Abha Bhattarani}, year={2018}, month={Jan} } @misc{Aliyah Kovner_2018, title={Concerned About Data Privacy? 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You should welcome it into your mind}, url={https://www.telegraph.co.uk/news/health/11961415/Google-wants-to-monitor-your-mental-health.-You-should-welcome-it-into-your-mind.html}, author={Kirkup, James}, year={2015}, month={Oct} } @misc{Leah Campbell_2018, title={Childbirth Deaths for Women of Color?}, url={https://www.healthline.com/health-news/giving-birth-in-us-dangerous-for-women-of-color}, journal={Healthline}, author={Leah Campbell}, year={2018}, month={Sep} } @misc{Maddy Savage_2018, title={Thousands Of Swedes Are Inserting Microchips Under Their Skin}, url={https://www.npr.org/2018/10/22/658808705/thousands-of-swedes-are-inserting-microchips-under-their-skin}, journal={NPR.org}, author={Maddy Savage}, year={2018}, month={Oct} } @misc{Mahsa Fratantoni_2018, title={My Health Record myths busted}, url={https://thenewdaily.com.au/life/wellbeing/2018/07/16/my-health-record-myths/}, journal={The New Daily}, author={Mahsa Fratantoni}, year={2018}, month={Jul} } @misc{Mark 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Published 17-01-2019 3:01