DMNS refutes allegations of data misuse

NOTMYTRIBE received this response from the Denver Museum of Nature and Science to our post: IS THE MUSEUM OF NATURE AND SCIENCE GATHERING PRIVATE DATA FOR HEALTH INSURERS? In the July 26 article I outlined concerns that medical data specialists could be harvesting checkup results conducted on visitors to the DMNS exhibit “Expedition Health.”

July 29, 2009

Dear Eric,

As the Curator of Human Health at the Denver Museum of Nature & Science, and a member of the team that created the Expedition Health exhibition, I can say unequivocally that visitor information recorded in the exhibition is NEVER shared with insurers, and the “signs of subterfuge” you detail in your blog have no basis in fact.

Privacy issues were a top consideration in the development of Expedition Health because the exhibition was deliberately designed to be highly personalized. Based on research and best practices in informal science education, we know that people learn human biology better when they’re learning about their own bodies, not the human body in general. The data that visitors provide when they sign-in to get their Peak Pass serves no other purpose but to customize Expedition Health for each person with the goal of creating a relevant, empowering, educational and memorable experience.

While visiting Expedition Health, visitors can choose to participate in activities that record their resting heart rate, their target heart rate, their height and arm span, their stride length, speed and energy score. These activities are designed to provide data that is accurate, but this information is not intended to be used for any clinical or diagnostic purpose. The true reason for this data collection: through these measurements, visitors see that their bodies are constantly changing in ways they can see, measure and optimize though healthy lifestyle choices.

Contrary to the claims made in your blog, we do not collect biometric data such as fingerprints,, voice patterns, retinal scan, etc., nor do we gather information about diet preferences, weight, body fat ratio, “stress test” results, vital statistics or present/past tobacco or sunscreen use. Visitors are challenged to build a healthy meal and see hypothetically what they might look like based on lifestyle choices such as wearing sub block.

Information provided by visitors in Expedition Health—information that personalizes the experience and therefore enhances the educational experience—is stored in a secure database. This database does not interface with the Museum’s ticketing systems. A very limited number of staff members in the Museum have access to the visitor information that is gathered at the exhibit components. The data is kept so that visitors can look at their information and extend their learning experience at home by logging on to their own unique and secure web site.

Visitors have two weeks to access their information online. Every two weeks, 98 percent of our visitors have their data purged from the database because they have not accessed it online after their visit to Expedition Health. The remaining two percent of visitors who elected to see their data online and extend their learning experience have their data saved in the database for six months should they wish to access their data again. The Museum never shares this data with any outside entities.

Finally, the Museum maintains as strict policy with donors when it comes to the development of exhibition content and the sharing of information gathered in the exhibition. Kaiser Permanente Colorado is the presenting sponsor of Expedition Health, and the lead donors include Boettcher Foundation, The Colorado Health Foundation, and Gates Family Foundation, a Colorado-based foundation that is not connected with the Bill and Melinda Gates Foundation. While these organizations did provide funding, they did not have any involvement in content development for Expedition Health, nor have they ever received any visitor information recorded on Peak Passes. This distinct separation between content and funding is critical to the Museum’s long-standing credibility.

As the region’s leading resource for informal science education, the Museum is committed to presenting objective scientific content, and retains control of and responsibility for all exhibits and programs. When the Museum developed Expedition Health, we worked to ensure that our new exhibit was firmly grounded in the most current biological science and was relevant to visitors. All content in Expedition Health was created or vetted by Museum staff members—scientists, educators and exhibition designers—with the help of a blue ribbon advisory board. Our overall aim with Expedition Health is to broaden visitors’ knowledge of human biology, disease, and wellness, and inspire the application of these discoveries to their lives.

I respectfully request you post this response online. If you would like to discuss this further, I invite you to contact me directly at the Museum.

Sincerely,

Bridget Coughlin, PhD

Thank you Dr. Coughlin, we are eager to take you up on your offer. Ultimately I would hope to see the museum provide its visitors a written assurance of what you’ve explained.

Ours is a surveillance society where military recruiters are granted access to high school records, where consumer profiles are traded among marketers, and health insurers are pushing to overcome national privacy safeguards by digitizing all medical records. You have explained that the “Expedition Health” exhibit is not collating its data with others. Because current technology makes clandestine data harvesting feasible, perhaps the museum could introduce firewalls to demonstrate how their visitors’ anonymity remains protected. This would offer more comfort than docents who assure patrons that the information is purged every night, or you, who explain it is purged after two weeks.

1 thought on “DMNS refutes allegations of data misuse

  1. Avatarirvnrynn

    Perhaps if one is concerned about the use, misuse and abuse of personal data, one might then use aliai, or otherwise give information which cannot be misused.
    If you don’t want some one to know something about you, don’t tell ’em…

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