John Dodge of Health-IT World asks a great question: Who Owns the Medical Record? After describing a difficult experience of a friend, Dodge concludes: "we are rapidly approaching an age where the main rights to medical records (and HIPAA would seem to confirm this) should be patient-controlled. Patients should at least enjoy unrestricted anytime-anywhere rights to them."
UPDATE: Here is a relatively recent introduction, with references, to issues such as ownership and privacy of electronic medical records.
Regina Herzlinger is convinced that markets are the key to providing medical consumers what they need: choice, control, and information (CCI). She is the editor of a new collection of papers entitled Consumer-Driven Health Care: Implications for Providers, Players, and Policy-Makers (Amazon shows publication date to be April 9th). This book (which I have neither read nor received in the mail yet) promises to update and expand the vision she described in her last book Market-Driven Healthcare (1997).
Here is a recent interview with Herzlinger:
Richard L. Reece M.D. "Herzlinger: From Market-Driven to Consumer-Driven Healthcare" HealthLeaders Magazine. March 15 2004.
Affymetrix, Inc., (Nasdaq: AFFX) announced today that its new GeneChip® Mapping 100K Array Set is now broadly available through an early technology access program. This two-microarray set can genotype over 100,000 SNPs and is the first in a family of products that will enable scientists to begin large-scale whole-genome association studies, which up to now have been unaffordable or impractical…The 100K allows researchers to genotype over 100,000 SNPs using just two reactions. Previously, genotyping 100,000 SNPs would have required 100,000 PCR reactions…“The GeneChip Mapping 100K Set is the first in a family of products that will enable scientists to identify genes associated with disease or drug response across the whole genome instead of just studying previously known SNPs or genes, and to study complex real-world populations instead of simple ones. To do this, we are making large-scale SNP genotyping not only quick and easy, but also affordable — about 1 cent per SNP” [says Greg Yap, Sr. Marketing Director, DNA Sciences].
New Affymetrix Arrays with 100,000 SNPs Available for Early Technology Access Customers, Affymetrix Press Release, April 5, 2004.
Given the fragmentation of medical care and medical records among many healthcare providers, it is essential that consumers have control over this information and the ability to bring it to the attention of their healthcare providers. Moreover, empowering consumers with responsibility for their own genetic information would resolve difficult issues regarding privacy by enabling each individual to determine what level of privacy is appropriate for him or her. Many individuals may choose to have personal genetic information incorporated in their medical records or used for research, thus accepting any attendant risks to privacy. Others may choose to keep this information confidential or release it selectively when it impacts their healthcare…A model that empowers consumers with confidential knowledge of their own genome and the ability to make informed decisions concerning their healthcare represents the ultimate expression of a truly personalized medicine. It is also an effective strategy for circumventing the inadequate infrastructure for genomic services, improving the quality of care, and strengthening protections for individual privacy and autonomy.
Fred Ledley. "A consumer charter for genomic services." Nature Biotechnology. 20(8): 767. (August 2002)
Q: Would you have any qualms about undergoing genetic testing in the current environment?
A: Yes, I would. If I were in a situation where I was confident that a particular genetic test was highly indicated and where the results might give me the information that could provide me with an opportunity to reduce my risk, I would be very interested in the test, but I would have to weigh that against the likelihood that this could result in damage to my employability or to my ability to get health insurance. And that would be a serious factor. I would not take that lightly. I do think the risks, while not huge, are real, and until we have a circumstance where that is effectively outlawed by well-written federal legislation, I would be quite uneasy.
This from a recent interview of Francis Collins by American Medical News. Following the text of the interview is a brief discussion of alternative options, such as working on legislation at the state level instead of federal. Also, Nancy Fisher of University of Washington wonders whether insurers unable to assess risk are still insurers: "If we say health insurance can’t use [genetic information] to spread the risk, then maybe we don’t want health insurance and should find another way to pay for illnesses."
Read the whole article:
Joel B. Finkelstein, Protecting genetic privacy: Is a law needed? American Medical News. April 5, 2004.
For more on the views of Francis Collins regarding genetic discrimination legislation, see here.
For more details on the views of Dr. Fisher, see her recent editorial in the Cleveland Clinic Journal of Medicine "Genetic testing and health insurance: Can they coexist?" in pdf.
Here is a link to a 1992 interview with Neil Holtzman where he does a good job summarizing some of the key issues surrounding genetic testing.
Publisher as lifeguard? Informational poverty is good for health? I’m not sure this is a winning argument:
But the most surprising comment came when publishers were asked how they intended to enfranchise those currently unable to access scientific research…[John] Jarvis [managing director of Wiley Europe] startled the audience by replying that it was dangerous to make medical information widely available to the public. "This rather enticing statement that everybody should be able to see everything could lead to chaos," he said dramatically. "There is a lot of information in the world which most of us need help with [and] you could get yourself in a terrible mess if you go and read this kind of information."
Richard Poynder, The Inevitable and the Optimal, Information Today, April 1, 2004.
(Thanks to Open Access News for the pointer)