Prince William’s DNA

As more individuals start posting their genomes or other genetic information online, privacy issues grow. A recent article from GenomeWeb about Prince William’s DNA highlights one of PPR’s concerns about publicly sharing such information: one person’s choice to research and reveal information about themselves reveals information about so many others who had no say in that decision.

To be clear, PPR is not opposed to genetic testing and actually believes there are many new and exciting possibilities that exist within the realm of genetic analysis. However, there are several issues that need to be addressed before people start encouraging others to publicly share their own genetic information. This excerpt from the article sums up the dilemma quite nicely:

“What is noteworthy is the ethics of publishing details of this genetic analysis at all,” Brice says, noting that “one of the major ethical concerns about genetic information and privacy” is that individual information can lead to the disclosures about family members.

The Duke’s cousins are free to have genetic tests if they want, but disclosing information about other, non-consenting individuals, is “highly questionable,” Brice says.

To read the full article, click here. (Note: Free subscription may be required).

Re: Web Privacy Becomes a Business Imperative

New York Times article Web Privacy Becomes a Business Imperative by Somini Sengupta discusses web privacy affecting businesses’ bottom line. As Mozilla’s Chief Privacy Officer says in the article:

“They’re asking for a different level of privacy on your service,” he said, “You have to listen to that. It’s critical to your business.”

Finally. More Internet companies are realizing the truth behind what PPR has said all along: products and services that don’t offer real privacy and security don’t fly with consumers. While some still may debate the exact meaning of “privacy,” what we consistently see is that consumers want to have control over what happens with their data. It’s about time we start listening to what the public wants and honor everyone’s right to be let alone as they see fit.

PPR at ICASM Symposium at Hofstra U.

The Ethical Use of Internet Cloud Based Apps and Social Media (ICASM) in Health Care
Tuesday, April 24, 2012

Deborah C. Peel, MD will be participating on a panel at Hofstra University for their ICASM Symposium

Panel Title: The Ethics of ICASM in Healthcare: Social Policy, Legal Responses, and Medical Strategy
Moderator: Corinne Kyriacou, Ph.D., Hofstra University School of Education, HHS
Panelists:
* Deborah Peel, M.D., Patient Privacy Rights
* Brian Mulligan, North Shore-LIJ Health System
* Michele Mathes, J.D., American College of Physicians
* Scott Gottlieb, M.D., New York University Medical Center

View the Symposium Agenda Here
Register Here

More details are below and on the Symposium Site

“Welcome to Hofstra University and The Ethical Use of Internet Cloud Based Apps and Social Media (ICASM) in Health Care conference. This conference is the first major event of the Hofstra Bioethics Center. The Center, sponsored by the University, the Maurice A. Deane School of Law at Hofstra and the Hofstra North Shore-LIJ School of Medicine, represents an interdisciplinary effort to advance the study of bioethics and to bring the fruits of that study to the worlds of healthcare and biomedical research.

Today we will explore the benefits and the risks of ICASM in healthcare and medical research. Reliance on cloud-based apps by health care professionals, scientists, lawyers, IT personnel, and health educators brings efficiency and promises better healthcare to patients. But this development comes with risks to security and privacy. Similarly, social media gives individual patients and patient groups a means of sharing healthcare information quickly and widely. Social media’s online communities can provide useful information to biomedical researchers, physicians and patients and can foster a productive sharing of information among these players. Yet, social media also comes with ethical risks.

Each of four conference panels will consider the benefits that ICASM offers to healthcase professionals, hospitals, other healthcare facilities, medical researchers and patients, and each of the panels will consider the ethical obligations such modes of instantaneous information sharing should impose on each stakeholder. To encourage wide participation, dialogue and cooperation, conference panels will be plenary, with adequate time provided for panel discussions and for question and answer sessions.”

View more and register at: http://www.hofstra.edu/Community/culctr/culctr_events_ICASM.html

Data-mining: Australia Just Calls It Something Else

In Australia, the data mining industry pays doctors to sell patients’ prescription records. In the US they pay pharmacies, hospitals, and PBMs. See Article.

A complaint to the Australian Privacy Commissioner was dismissed because the data miners claimed that patients and doctors were “de-identified”. But it is very difficult to fully de-identify personal health data so that re-identification is impossible. If true, the industry should have offered proof that their methods actually work and that the data cannot be re-identified.

As in the US, the theft and sale of personal prescription records is rationalized with claims that it can be used to “provide valuable insight into healthcare trends– including the spread of infectious diseases”. The word that describes using data to provide “valuable insights” is “research”. It happens to be both illegal and unethical to do research without informed consent.