Thank you to Alyssa Friedland  from Genetic Alliance for this press release – a momentous occasion in the field of genetics.  I have decided to issue the press release in its entire form.  You may think me biased but the arguments put forward in the statement are cogent, well thought out and they echo my own opinions.
What we need to do now is ensure that we take a responsible approach to this legislation and continue to ensure that the field of genetics is introduced into mainstream medicine ethically and to the highest clinical standards.
Elaine Warburton   www.geneticsandhealth.com
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President Bush Signs Landmark Genetic Nondiscrimination …read more

 
Scientists and policy developers at the Translating ELSI, Ethical Legal Social Implications of Human Genetics Research conference have been mulling over the myriad of ethical arguments over testing and storing our kids’ DNA.
The biggest driver for the advancement of genetic testing is the ‘early detection improves outcomes’ argument and if an individual is found to be at risk of a particular disease then life-long surveillance is a remedy.
However, consider the scenario that you’ve just discovered that your 9 year old daughter has a risk of developing breast and ovarian cancer and your 6 year son is at risk of early-onset Alzheimer’s.  Where do you go for …read more

Following my recent article on ethical guidelines for informed consent in genomic studies, a group of scientists met at the Translating ESLI conference in Cleveland to debate this whole ethical argument. This issue is particularly critical for genome-wide association studies and in establishing and using large biobanks.
It was universally acknowledged that consent forms are difficult to read for participants who do not have reading skills beyond middle school or high school, for example. As a result, these paticipants may be unaware of what exactly the research could mean to them.
Laura Beskow, a researcher at Duke University’s Institute for Genome Sciences and Policy worked …read more

G&H’s INTERVIEW WITH NAVIGENICS
Navigenics approached Genetics and Health for an interview. With so much written about similar genomics companies such as 23andme, Knome, deCODE genetics, I was intrigued to learn more about this company.  In particular, Navigenics appears to be the only company within this industry genre who provides a comprehensive wellness model – a healthcare model that Opaldia, the genetic screening and health surveillance company I founded, endorsed whole-heartedly. 
I interviewed Navigenics’ Medical Director Dr Michael A Nierenberg MD, clinical professor of medicine, emeritus at Stanford University to find out what makes Navigenics stand out amongst its competition.  He was …read more

Continuing G&H’s exclusive interview with Navigenics’ Medical Director Dr Michael Nierenberg, we explore the whole issue of privacy, insurance, GINA and ethics…..
One of the main consumer concerns is that of privacy of information, both in terms that a genetic test has been undertaken but also that the results of the test are kept private and out of the public domain.  At the time of writing, the controversial GINA (Genetic Information Non-discrimination Act) is being passed by the US Senate which will enable genetic testing information to be kept private and not be used to discriminate against an individual, particularly by the insurance industry.  …read more

It’s been quite a month for genetics and ethics!  There has been much commentary on GINA (Genetic Information Non discrimination Act) and now an influential academic group have developed an ethical framework of recommendations to encourage individuals to join whole-genome association studies.
According to a large group of genomics scholars, researchers, ethicists, and policy designers and watchers, in order to live up to its potential, whole-genome research in the future should be built upon some ETHICAL foundation that will give people the confidence and trust they will need in order to become volunteers.
The group of experts published a statement of consensus this week in PLoS …read more

Following my article on GINA (Genetic Information Nondiscrimination Act), the influential doctors’ group, the American College of Physicians (ACP), wants the GINA to become law.
The ACP does not directly address the concerns of employers or health insurance companies, but sides with the GINA supporters on individual rights to insurance protections. The ACP agrees that insurance providers should not be able to use an individual’s genetic information to deny or limit health coverage or establish eligibility, enrolment, or to set requirements. In addition, ACP said insurers should be prohibited from setting different premium rates based on an individual’s genetic information.
ACP also said it …read more

In January, The New England Journal of Medicine published an article criticizing the popularization of genetic testing by companies such as 23andme, deCode, Navigenics and Knome who doctors believe are introducing genetic testing prematurely into a commercial setting and confusing public and medics alike.  The authors of this article coined the phrase ‘recreational genomics’ for this type of testing.
While all of these companies claim that their tests should not be used as the basis for medical decisions, some physicians are concerned that customers for these tests will nevertheless begin seeking medical direction based on their results.  Doctors have been unprepared for the genetic advice they need …read more

A broadly supported piece of legislation drafted to protect Americans from genetic discrimination in the workplace and by health insurance companies has passed in the US House of Representatives.
The Genetic Information Nondiscrimination Act (GINA) passed in the House provides for equity of health insurance coverage for mental disorders and substance abuse-related disorders.
“Given that most mental health diseases are genetically linked, GINA is natural addition” to the mental health bill, Rep. Louise Slaughter said in a statement.
For a wealth of advice, information and latest mental health developments, do visit Alicia at Mental Health Notes
Elaine Warburton  www.geneticsandhealth.com

 
Leon Kass served as chairman of the bioethics council charged with advising US President George W. Bush on many “hot” bioscience issues such as stem cell research and cloning.
Noted for his frankness and pretty much misogynistic ideals, once you cut through all this, his arguments do make some sense.  For example:
“There’s a large cultural bias toward progress, a belief that innovation is good innovation. …  I’m inclined to a more classically tragic view in the sense that all the good comes with some bad.”
AND
“In the biomedical area, the people who are bringing you all the novelties occupy the moral high ground. They …read more