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Posts Tagged ‘privacy’

Personal Genome Project – Update – Accepted!

In Uncategorized on October 10, 2010 at 5:57 pm

It has been just a week short of a year since I applied for the Personal Genome Project out of Harvard. Their mission is to “better able to advance our understanding of genetic and environmental contributions to human traits and to improve our ability to diagnose, treat, and prevent illness.” I totally, whole-heartedly support this. Their aim is to get 100,000 genomes up and public for the research community and, well, the public; a counter to private companies that sell your sequences back to you for the same purpose.

Having my information out in public does not scare me. It worries me that that information could be used against someone related to me in some not so distant future. These are things I am still contemplating and still discussing with my family. Letting the world [read: insurance companies] know my conditions, illnesses, surgeries, medication history, etc. is a bit more intense than simply tweeting casual cynic about graduate school depression and poverty. The current rules and regs are not as protective as we would like. Imagine that.

Anyhow, for those interested in these issues and me as a PGP participant, a couple of interesting points in my acceptance letter:

“(2) PGP Public Profile: Now that you are enrolled in the PGP, we have created a public profile for you. The information contained in your PGP public profile will help us to prioritize the allocation of resources for tissue collection and DNA sequencing as they become available. We plan to incrementally roll out new features that will enable you to voluntarily add genomic, health, and trait data to your PGP public profile over time. One of the first features we have implemented is the ability to link your Google Health account with your PGP public profile. By linking these two accounts, information contained in your Google Health account will be added to your PGP public profile. When your Google Health account is updated with new information, your PGP public profile will be updated too. We hope you find this is a convenient way to share basic health information, like medications, allergies, and conditions. Please remember that you are not required to link your Google Health account with your PGP public profile, and that you are free to withdraw from the PGP at any time.

(3) DNA Sequencing: We want you to understand that it may take a considerable amount of time before we are able to sequence your genome. Although the cost of whole genome sequencing is dropping fast, it still costs thousands of dollars per person at the current market price. Our ability to sequence your genome will depend on our success in securing funding and sequencing services for the study. These are all things we are actively working toward, but it is difficult to predict how long it will take and there are no guarantees that we will be able to provide DNA sequencing for every individual who enrolls in the study. You should also know that we may shuffle the order of participants as we prioritize the allocation of DNA sequencing and other resources.”

I have some time yet. Money, as always, is an issue for public science. Until then, here is what a public profile looks like, complete with medication history.

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Public opinion on biobanking privacy – Trust in Academia

In Uncategorized on November 15, 2009 at 8:11 pm

kaufman 2009 public opinion about privacy in biobanking.pdf
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"Survey correspondents consistently were more worried about government researchers and agencies accessing data from the cohort study than about academic and medical researchers doing so… consistent with several other studies that observed that people are willing to share medical information with academics than with governments or with industries… implies informed-consent documents should clarify, to the extent possible, what types of researchers will have access to the data."

However:
"Privacy concerns are not strongly related to willingness to join a research study"

DARPA Director, Dr. Regina E. Dugan talks at UCLA, IA40

In Uncategorized on October 30, 2009 at 6:03 am

Today was the Internet Anniversary celebration at its birthplace, UCLA. This celebratory event was co-organized by Brad Fidler. Read his press release here. There were several great ones, (see them), but here is DARPA director, Dr. Regina E. Dugan’s talk.

She speaks of: women of science are going to save the day & changing the image of science (‘we’re smokin’ hot. so that is progress, real progress‘); challenges; iconic discovery; going viral; networking; these being serious times that require the best of all of us. And best, in my opinion, we need the wonder. A History of Science perspective: this.is.gold. The call-to-serve article she cites is attached.

http://www.ustream.tv/flash/video/2448272

http://www.darpa.mil/directorbio.html

a call to serve.pdf
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Mind Your Tweets: CIA and EU Surveillance

In Uncategorized on October 27, 2009 at 7:04 pm

Mind Your Tweets: CIA and European Union Building Social Networking Surveillance System

http://dissidentvoice.org/2009/10/mind-your-tweets-cia-and-european-union-building-social-networking-surveillance-system/

genetic privacy & sci fi, a snippet revisited just because its on my mind

In Uncategorized on October 24, 2009 at 2:07 am

    https://i1.wp.com/img.skitch.com/20091024-pshtayup5x6hn4qypbtjb313kg.jpg

http://www.pgpstudy.org/projectlit/participating/participating7.htm

Using Turnitin & Privacy infringement

In Uncategorized on October 22, 2009 at 11:06 pm

In a meeting my colleagues and I had with our professors, we discussed whether or not to use Turnitin for midterms and essays. I have been and am opposed to it. Turnitin is an online application teachers can use to check for originality in papers written by their students: http://turnitin.com/static/index.html The aim is to support academic integrity and prevent plagiarism, which seems like it would be helpful when you have large classrooms and repeated content. A paper is crosschecked against every other paper turned in on the site, as well as against the world wide web of uploaded content.

There are various flaws with this kind of program, importantly with respect to intellectual property. One of my colleagues provided this review of Turnitin, attached. Part Two, which is not that lengthy, addresses legal and ethical issues of students’ copyrights and right to privacy. The author addresses the Family Education Rights and Privacy Act of 1974 (FERPA) that protects student records, teaching pedagogy and hypocrisy.

Using Turn It In at UCLA.pdf
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