The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

To view the full article by Andrea Peterson in ThinkProgress, please visit: The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

In the early 1950’s, doctors at Johns Hopkins took the cells from Henrietta Lacks’ tumor and, without her consent, have used them for years for research. Earlier in March, the entire genome of Henrietta Lacks was published with neither the knowledge nor consent of her surviving family. This privacy breach has “started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.”

Some key quotes from Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME):

  • -“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”
  • -“[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”

The Immortal Life of Henrietta Lacks, the Sequel

This is an amazing article written by Rebekah Skloot, author of ‘The Immortal Life of Henrietta Lacks’, demanding consent and trust.

Rebecca is right—-the only way Americans will trust researchers is when they are treated with respect and their rights of consent for use of genomes and genetic information is restored.

The public does not yet realize that they have no control over ALL sensitive health information in electronic systems. We have NO idea how many hundreds of data mining and research corporations are collecting and using our blood and body parts. We ALSO have no control over our sensitive health information in electronic systems violating hundreds of years of privacy rights.

This week the many stories about CVS showed employers can force employees to take blood tests, health screenings, and be forced into “wellness” programs–all of which REQUIRE collection of sensitive health information—which employees cannot control.

We have NO map of who collects and uses personal health data—Henrietta Lacks family was NEVER asked for consent to use her genome.

Contribute to build a map to track the thousands of hidden users of health data at: www.localhost:8888/pprold

Attend or watch the 3rd International summit on the Future of Health Privacy (free). Register at: www.healthprivacysummit.org

HIStalk News 3/22/13 – Quotes Dr. Deborah Peel on new CVS policy

To view the full article, please visit HIStalk News 3/22/13.

Key quote from the article:

“Patient Privacy Rights Founder Deborah Peel, MD calls a new CVS employee policy that charges employees who decline obesity checks $50 per month “incredibly coercive and invasive.” CVS covers the cost of an assessment of height, weight, body fat, blood pressure, and serum glucose and lipid levels, but also reserves the right to send the results to a health management firm even though CVS management won’t have access to the results directly. Peel says a lack of chain of custody requirements means that CVS could review the information and use it to make personnel decisions.”

CVS requiring employees to undergo weight, health assessment

To view the full article, please visit CVS requiring employees to undergo weight, health assessment.

Key quotes from the article:

“This is an incredibly coercive and invasive thing to ask employees to do,” Patient Privacy Rights founder Deborah Peel told the Boston Herald, noting that such policies are becoming more prevalent as health costs increase.

“Rising health care costs are killing the economy, and businesses are terrified,” she continued to the Herald. “Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.”

“While patient-privacy activists have cried foul, Michael DeAngelis, a CVS spokesman, explained that the goal is health.”

To learn more about the issue, please visit our Health Privacy Summit Website and register for the 3rd International Summit on the Future of Health Privacy.

Dr. Peel on American Public Media’s Marketplace

Dr. Peel questions CVS’s new health coverage policy that penalizes employees who would rather keep personal health information, such as their weight and blood glucose levels, private. In Mark Garrison’s report for Marketplace on March 20, 2013, Dr. Peel asks, “How many people can afford to have $600 deducted from their paycheck every year?”

Listen to the story below (uses iFrame). If you’re unable to listen here, you can visit Marketplace.org for the story.

CVS imposes health penalty if workers’ body weight is not reported or they don’t quit smoking

To view the full article, please visit CVS imposes health penalty if workers’ body weight is not reported or they don’t quit smoking.

CVS has instated a very invasive new policy of charging workers a hefty $600 dollar a year fine if they do not disclose sensitive health information to the company’s benefits firm. According to the article, “Under the new policy, nearly 200,000 CVS employees who obtain health insurance through the company will have to report their weight, blood sugar, blood pressure and cholesterol to WebMD Health Services Group, which provides benefits support to CVS.” However, if employees refuse, they will be charged an extra $50 a month in health insurance costs.

Patient Privacy Rights’ Dr. Deborah Peel tells the public, “‘This is an incredibly coercive and invasive thing to ask employees to do,’…’Rising healthcare costs are killing the economy, and businesses are terrified, Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.'”

To learn more about this issue, please visit our Health Privacy Summit Website and register for the 3rd International Summit on the Future of Health Privacy.

Dr. Peel on Good Morning America

Dr. Peel was interviewed for Steve Osunsami’s report on the CVS policy requiring employees to report personal health information or pay $50 more per month for coverage. The story appeared on Good Morning America on Wednesday, March 20, 2013.

Watch the video below (uses iFrame). If you can’t see it below, you can check it out on ABCNews.com here.

Dr. Peel on CNN’s OutFront with Erin Burnett

Dr. Peel joined Erin Burnett and Reihan Salam on Tuesday, March 19, 2013 for a discussion on CVS’s new policy that requires workers to report health screenings or pay a $600 yearly surcharge.

Watch the video below (uses Flash). If you’re unable to see it below, you can view it here on CNN.com.

See a transcript of the full segment here.

Re: Your Online Attention, Bought in an Instant

Natasha Singer unearths more about the instantaneous selling of intimately detailed profiles about Americans in her article in The New York Times: Your Online Attention, Bought in an Instant

Best case: We get more ‘targeted’ ads. We supposedly want personalized ads so badly that we willingly give up deeply intimate portraits about who we are to the hidden data mining industry forever. Really? When did we ever have ANY meaningful choice about who collects and sells our most intimate personal information? See Duhigg’s NYTimes story.

Worst case: Hidden, technology enabled discrimination prevents us from getting jobs and destroys our reputations before anyone will meet with us. Companies like Rubicon literally know more about us than our partners, our mothers or fathers, our best friends, our children or our psychoanalysts. This information is used to harm us—-read Prof Sweeney’s paper on how ads like “YOUR NAME, arrested?” pop up next to the names of African-Americans but NOT next to Anglo-sounding names. What happens when future employers see ads like that when searching for information about you online? Read her paper here.

HELP FIX THIS PRIVACY DISASTER
HELP BUILD a map that tracks all hidden users and sellers of our sensitive health information.
DONATE to the Harvard/Patient Privacy Rights’ research project at: https://org2.democracyinaction.org/o/6402/donate_page/donate-to-thedatamap

European citizens have far stronger protections for their sensitive health and personal data than US citizens.
Learn why and learn about solutions to strengthen US data protections. Register for free to attend the 3rd International Summit on the Future of Health Privacy June 5-6 in DC: www.healthprivacysummit.org

Re: The Internet is a surveillance state

In response to the CNN article by Bruce Schneier: The Internet is a surveillance state

Bruce Schneier is wrong. Privacy is not over — the public is just now learning how invasive Internet technology, tech corporations, and government really are, and that they ACT to protect and maintain the US surveillance economy. When enough citizens tell Congress and the President to stop, this privacy disaster will stop.

The public is just beginning to WAKE UP. Today is the start of privacy in the Digital Age in the US, not the end.

It’s a lie that people happily give up privacy for “targeted ads” — tech giants like Google, Facebook, etc. have PREVENTED us from having apps and tools that enable privacy (ie, our right TO control personal information online). We have NO choices because government and the data mining industry have prevented us from having meaningful choices.

Signs of intelligent life in the Universe:

  • Attend or watch the 3rd International Summit on the Future of Health Privacy (its free). The EU Data Protection Supervisor will keynote and so will the US Chief Technology Officer—-the stark differences between US and EU data protections will be discussed—register at: http://www.healthprivacysummit.org/d/vcq3vz/4W
  • SnapChat—millions of free downloads of an app that shows people want technology that gives THEM control over their data: single use of info (a picture in this case) and the ability to delete info. See: http://patientprivacyrights.org/2013/02/snapchat-and-the-erasable-future-of-social-media/
  • A recent Pew Research Center study found smartphone users are taking action to protect their privacy:
  • The default for Microsoft’s Windows 8 browser is ‘Do Not Track’
    • Microsoft’s Chief Privacy Officer Brendon Lynch said a recent company study of computer users in the United States and Europe concluded that 75 percent wanted Microsoft to turn on the Do Not Track mechanism. “Consumers want and expect strong privacy protection to be built into Microsoft products and services.”
    • See more in the New York Times article: Do Not Track? Advertisers Say ‘Don’t Tread on Us’

DONATE to help Latanya Sweeney and Patient Privacy Rights build a health data map—-we MUST prove that thousands of hidden data users are stealing, using , and selling our personal health data: http://patientprivacyrights.org/donate/

SEE Latanya describe thedataMap at: http://patientprivacyrights.org/thedatamap/
This is the beginning of privacy, the war has just begun.