Tuesday, July 17, 2001

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"A court case in the UK that involved police gaining access to confidential medical records threatens to undermine a £20 million national database to study the role of genes in disease, senior government advisers have been told."

"The Human Genetics Commission, the Government's own watchdog on DNA research, said it was deeply concerned at the implications of the court case, in which supposedly private records of a medical project were used by police despite protests from scientists."

redux [03.01.01]
British Medical Journal Safeguards for research using large scale DNA collections

"Declining confidence in the governance of clinical practice has serious implications for medical research. Recent studies looking at public opposition to genetically modified foods and the social psychology of risk have shown that the level of trust in the institutions governing a particular activity is the key factor affecting public perceptions of risk in that area.2 The loss of confidence in the Ministry of Agriculture, Fisheries, and Food and the agencies responsible for food safety following the uproar over bovine spongiform encephalopathy laid the foundation for widespread public scepticism about the safety of genetically modified foods. If there continues to be erosion of trust in the medical profession there is a real danger that controversial areas of research, such as genetics, will provoke increasing levels of public opposition. It is in this context that the proposals for the creation of a very large collection of DNA samples for genetic research should be examined."

British Medical Journal Safeguards for research using large scale DNA collections

"Current and emerging technologies will allow rapid identification of mutations causing well described single gene disorders, single nucleotide polymorphism profiling, and genomic sequencing. These powerful technologies may enable the identification of predispositions to common, multifactorial disorders and predict individuals' responses to conventional therapeutic interventions. On the basis of discussions with general practitioners and practice nurses, and the findings of a recent informal survey among general practitioners in South Wales about attitudes and knowledge of genetics (unpublished data), I think that few professionals in primary care would be confident in explaining the nature of these techniques and the importance and implications of the data that would be generated. This would seriously limit the ability of professionals in primary care to obtain informed consent and answer questions that arise over the years of the study. The long term nature of the proposals reinforces the view that education and training in genetics, and particularly in the basic science that underpins the subject, are a priority for medical, nursing, and associated professions at the basic, specialist, and continuing education stages. The success of the proposed study and future population genetic studies are dependent on this educational need being immediately and effectively addressed."

redux [10.31.00]
Healthcare Informatics Truth AND Consequences

"Space has been called the last frontier. But now modern science has begun exploration of another new territory: the human genome. In mapping this instruction book of life, researchers are becoming able to pinpoint genes for a wide array of diseases and to guide creation of revolutionary new drug treatments.

But this new age of discovery also is resurrecting old issues of privacy and discrimination. Medicine can now accurately predict who will contract certain illnesses, such as Huntington's disease, but it still cannot save patients from its debilitating effects. On the other hand, a woman might test positive for a gene predisposing her to breast cancer but nevertheless live a long, cancer-free life.

How can medical records be protected so patients are free to be tested for genetic defects without losing health insurance or being unfairly eliminated on job applications? Those who work with medical records--whether electronic or paper-based--will undoubtedly come face-to- face with such privacy considerations very soon, if they haven't already."

redux [07.18.00]
ComputerUser Medical Privacy Concerns Heightened by Genome Mapping

"Privacy advocates, still reeling from last year's passage of legislation that allows banks and insurance companies to share personal information, are bracing against a new threat to the confidentiality of medical and financial information: The Human Genome Project.

"Latanya Sweeney, professor of computer science and public policy at Carnegie Mellon University, said currently more than 40 US states have laws requiring hospitals to make available to insurance companies and researchers certain information about each visit they receive, including the diagnosis, birth date, ethnicity, gender and Zip code of all patients discharged.

While state regulations say such categories are sufficiently anonymous to conceal the identity of patients, Sweeney said companies can and do match such information with personally identifiable data, using just a few publicly available resources."

""It may surprise some to know that 87 percent of the US population is uniquely identifiable today by just their birthday, gender and zip code," Sweeney said."

"Sweeney said the stakes become much higher when genetic information comes into play. For instance, she said, gender can usually be identified using just the base of a person's DNA sequence. Using a larger chunk of DNA information, researchers can infer particular diseases by catalogued and known sequence patterns. Link those sequences to publicly available hospital data, and you have an undeniably complete picture of an individual's most private information, Sweeney said."