More on Genetic Privacy

Jane Black.  "Keeping Snoops Out of Your Genes." Business Week online. April 1 2004.

Genetic privacy may not be a headline grabber, but the House should make this bill a priority — despite the opposition of powerful insurance companies. By outlawing genetic discrimination, Congress would be taking a good first step in tackling what privacy advocates warn is one of the biggest medical-privacy challenges of the 21st century.

One of those advocates is professor George Annas. The chairman of Boston University’s Health Law, Bioethics & Human Rights Dept., Annas is a pioneer in the field of patients’ rights. Over the past 30 years, he has written or edited 12 books on health law, including the groundbreaking The Rights of Patients, published in 1975 and now in its third edition.

And in 1995, he drafted a report calling for a Genetic Privacy Act to regulate the collection, storage, and use of DNA.

The rest of the article is a Q and A between Jane Black and George Annas.  Here is one snippet from the interview (George Annas speaking):

"I think genetic discrimination is a potential problem. It’s not yet real because no employers and health-insurance companies that I know of are doing regular genetic screening. It’s just too expensive. And there’s no good data to prove that you can save as much as you spend by doing the test.  The real problems will come if your genetic information becomes public and every major group that makes decisions about you can use the information…The possibilities are endless."

Screening Adolescents

Mark D. Widome, M.D. "Should children be tested for adult diseases?" MSNBC News March 31 2004.

Several closely related adult conditions have their origins in childhood. Diabetes, high blood pressure, coronary artery disease, and obesity each place a large health burden on middle-age adults in the United States, yet they start silently decades earlier — often in the teen years or earlier. Should children be tested for adult diseases? Pediatrician and Today show contributor, Mark Widome, says, "yes." He tells viewers what can be done in the pediatrician’s office to combat these adult killers.

Dr. Mark Widome, professor of pediatrics at The Penn State Children’s Hospital in Hershey, Pennsylvania describes the criteria for screening, the screening tests, and the treatment for diabetes, hypertension, cholesterol, and obesity.  He notes that these four diseases have the following in common: each has a serious consequence, each has a long lag time, each is detectable early, and early interventions exist.

Genetic Privacy Legislation: U.S and abroad

United States
A press conference will be held in Washington on Thursday to urge the House of Representatives to pass its version of (S.1053) The Genetic Information Nondiscrimination Act (see my posts here and here).  This press release indicates there will be three speakers at the press conference: Sharon Terry (CEO of Genetic Alliance), Heidi Williams (mother of two uninsurable children with a genetic disease), and Francis Collins (director of the Natl. Human Genome Research Institute).

"Insurers to be denied genetic test data." Business World (Ireland). March 30 2004.

Insurance companies are to be denied access to clients’ health information obtained by genetic testing, under a provision of the forthcoming Disability Bill.  Employers and lending institutions will be similarly barred by the provision, according to the Minister of State at the Department of Justice, Equality and Law Reform, Willie O’Dea…He said that the Bill would therefore ban the use of information from genetic tests in assessing an individual for insurance, employment or a mortgage…The Irish Insurance Federation has its own a voluntary code of practice, under which information on genetic tests is not sought for life assurance policies below the value of E381,000.

"Genetic insurance tests OK: Swiss Assembly." Washington Times. March 18 2004.

The Swiss national assembly passed a measure Thursday allowing insurers to require genetic tests when issuing large life or injury insurance policies.  The measure calls for a general ban on required genetic testing, but makes exceptions for life insurance policies worth more than 400,000 Swiss francs ($313,000) or optional injury insurance worth more than 40,000 francs ($31,000)…In issuing the measure, the national assembly asserted genetic information should remain private, but not in cases where privacy makes business impossible…The assembly found denying access to genetic information in the case of extremely expensive insurance polices could make those policies prohibitively expensive or even completely unavailable in Switzerland.

UPDATE: Sirna Therapeutics Animation of siRNA

I love biology animations.  Here is a cool one on RNA interference by Sirna Therapeutics (.mpg file).  (Compare with this flash animation also on RNA interference.) 

UPDATE: Upon looking at the Sirna animation on siRNA a second time, I noticed that the double-stranded RNA at the beginning is left-handed.  We could call it artistic license, but it is really just an error.  If it makes the artists feel any better, they are not the first to make this mistake.  There is in fact a rather long and glorified history of our collective handedness illiteracy as shown in the Left-Handed DNA Hall of Fame.  The hall of fame very well could have been called the Left-Handed RNA Hall of Fame because RNA, like DNA, is made of right-handed sugars.  Not to be misled, nature isn’t entirely right-handed, either.  In fact, nature is intriguingly uneven handed.

Two egregious handedness mistakes for an article on proteomics in a popular trade magazine inspired Chris Welch to pen a poem that would have inspired the muses themselves (with permission):

On your cover a very rare sight,
a helix that gave me a fright.
Did you forget that this spiral
called DNA is chiral,
and it normally twists to the right?
          –Chemical & Engineering News, Aug 14, 2000         

My Very Own Medicine

David Melzer, Ann Raven, Don E Detmer, Tom Ling, Ron L Zimmern. My Very Own Medicine: What Must I Know? Information Policy for Pharmacogenetics. University of Cambride.  Funded by the Wellcome Trust.  July 2003. (summary pdf or full pdf)

EU conference: Genetics Testing Should Not Be Commercialized

At a recent conference and debate on “New genetic applications and access to healthcare”, organized by the European Commission and the Socialist Mutual Health Fund of Belgium, participants “called for increased vigilance against the risk of commercialisation of genetic testing” according to a press report.

Even though the press report is very brief and there are signs of translation difficulties, e.g. “fake positives” rather than the idiom “false positives”, it portrays the general attitude of the conference to be one of extreme skepticism toward genetic testing that is geared toward medical consumers. In response to the agreement by participants, according to the press coverage, that “it is important to legislate to keep genetic testing in the medical realm,” prescribed by “specialized teams” and out of the hands of private health insurance companies, “[r]epresentatives from the insurance sector argued that the patient should not be told the results [of genetic testing] either.” Another participant, Rudy Demotte, the Belgian Minister for Social Affairs and Public Health, insisted that, according to the press report, “progress in genetics is very slow, and that it is in prevention that genetics becomes very important. He also pointed out that it is not in the interest of anyone to make genetic testing commercially available as this would create the risk of misinformation.” Are there not any knowledgeable medical consumers in Europe? There is no question that potentially thorny issues surround genetic testing, but there must be more creative solutions than simply prohibiting or severely limiting the ability of medical consumers to learn about their own biology.

NHGRI’s new Social & Behaviorial Research Branch

National Human Genome Research Institute Opens New Branch, U.S. Medicine, March 25 2004.

The National Human Genome Research Institute (NHGRI) announced last month the formation of a new branch, the Social and Behavioral Research Branch (SBRB), to develop approaches to translating the discoveries from the recently completed Human Genome Project into interventions for health promotion and disease prevention, and for counseling patients and families dealing with the impact of devastating genetic disorders.

The SBRB, within NHGRI’s Division of Intramural Research (DIR), also will investigate the complex social, ethical and public policy impact of genomic research…

There will be a number of research groups within the SBRB. They include a behavioral genetics unit; a health communications unit; a genetic counseling service unit; a health promotion research section that includes a unit for disseminating counseling research methods; a community genetics research unit; and an ethics and social policy unit that includes research ethics. In addition, there will be several crosscutting themes addressed by researchers in the new branch, including the implications of genomic discoveries and research for health disparities, the ethical and legal implications of such discoveries, and strategies for information dissemination to medical and other communities.

Exhibit: Art of Larry Gonick

The Bancroft Library at UC Berkeley has an online exhibit of original artwork from Cartoon Guide to Genetics (1991). 

(Thanks to The Eyes Have It for the pointer)

Personal Disease Risk: Breast Cancer

Patricia Reaney. Computer Program Evaluates Breast Cancer Risk. Yahoo News, March 22 2004.

Scientists have developed a computer program to evaluate a woman’s individual risk of developing breast cancer.

Charity Cancer Research UK said the IBIS risk evaluator uses information about a woman’s family history of the disease to determine whether she has a genetic propensity to develop it.

Other factors including age, height, weight, use of hormone replacement therapy (HRT) and whether a woman has had children are included to give a projected risk.

…"This tool will initially be available only to doctors. In the longer term we do see something that would potentially be available for the population at large," [Jack] Cuzick added in an interview.

The program gives a woman’s individual chance of suffering from breast cancer as a percentage along with the average risk. Patients with a high risk are given guidance and advice about weight loss, use of HRT and screening programs to detect earlier signs of the disease.

…Cuzick said IBIS is already used in hospitals in Britain, the United States and Australia and could be made more widely available soon.

There are also plans to use the program to evaluate the risk of other illnesses such as heart disease and different types of cancer.

"We see it as the first step toward a project providing information to both men and women of their risk of major diseases and what they might do," said Cuzick.

"Rather than having health education that is blanketed to everyone, this would be personal, individualized information as to what your personal risk factors are based on your personal history." (emphasis mine)

Jonathan Tyrer, Stephen W. Duffy, Jack Cuzick. A breast cancer prediction model incorporating familial and personal risk factors. Statistics in Medicine. Volume 23, Issue 7 , Pages 1111 - 1130. (Abstract or full text in pdf)

Canadian Public Opinions on Genetic Privacy Issues

"Public Opinion Research Into Genetic Privacy Issues" Prepared for the Biotechnology Assistant Deputy Minister Coordinating Committee, Government of Canada, by Pollara Research and Earnscliffe Research and Communications.  Final Report issued in March 2003. (Summary in HTML or report in PDF)

Issues examined:

• general familiarity and awareness of genetic information and privacy issues;
• willingness to undergo, and experience with genetic testing;
• perceptions of the current and preferred governance models for privacy in connection with personal genetic information;
• the role of research and potential privacy constraints on its use of genetic information; and
• the degree to which insurance companies should have access to existing genetic information.

Authors describe the following three "general impressions" from the survey:

(1) Canadians have not yet engaged in any profound way in thinking about the privacy implications in the coming revolution in personal genetic information.
(2) Genetic information is generally seen in the same light as health information though many believe it to be more fundamentally personal with more worrying implications for abuse.
(3) On the whole, most people believe there are more benefits from knowing more about our genetic information than drawbacks.

Here are some of the more interesting snippets from the research article [Ed. note: This condensation is for the time-harried individuals.  I recommend reading the whole document -- only 14 pages -- in order to get more background from the authors about the stats]:

• [F]ewer than one in ten saying they were “very familiar” with the subject matter…This is one of those rare subjects in public opinion research where people truly underestimate their level of familiarity with an issue.
• 95% said they would undergo genetic testing if it would determine the best medical approach to dealing with a disease or condition they had.
• 89% said they would agree to testing to determine if there was an inherited disease they might pass on to their children.
• 58% said they would undergo testing simply to obtain more information about their own genetic characteristics.
• Almost 90% disagree with the proposition that they might not test themselves or their children because there is something “morally wrong” with genetic testing.
• Almost 80% believe government should have the right to prevent the use of genetic testing if it deems the tests’ purpose to be unethical.
• 37% would favor a ban home genetic testing kits [Ed.: Perhaps the most interesting stat of the bunch.  The brashness of such a large swath is a bit worrisome].
• 92% of Canadians agree with the proposition that it should be each person’s right to determine whether or not they have a genetic test.
• 91% do not believe that insurance companies should have the right to access existing personal genetic information. The level of opposition has increased since the question was first asked three years ago (86%.)
• 90% said employers should not have access to genetic information of applicants or employees.
• Concern about the confidentiality of personal information is high – particularly when it comes to financial (75% express some level concern) and medical (60%) information. Concern is far less prevalent about personal genetic information (47%)
• There is strong evidence from the research that an increase in knowledge about the area and discussion about it increase the conviction that the benefits of facilitating access to genetic information outweigh the drawbacks. At the end of the survey instrument – after almost 30 minutes of questioning about the issues – the question of benefits versus drawbacks was posed once again. The assessment that benefits of knowing more about our genetic information outdrew drawbacks grew from 63% to 77%.

Much of what I know about the current issues surrounding genetic privacy was gleaned from the excellent collection of papers in the book Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (Yale UP: 1997). 

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