DNA Consultants Home of the DNA Fingerprint

Will explore theme of official and unofficial ethnic self-identification from perspectives of genetics, marketing and other disciplines

A team of professors has just submitted a proposal for a 90 minute panel discussion at the 12th International Diversity Conference in Vancouver, B.C., June 11-13, 2012.

We'll use this blog to announce updates and you may place comments here and link to it.

Title:
Perspectives on Ethnic Identity: Epigenetics, Marketing, DNA and Genealogy

Panelists:
Donald N. Yates, DNA Spectrum
Dr. Anne Marie Fine, Fine Natural Medicine
Elizabeth Caldwell Hirschman, Rutgers Business School
Teresa A. Panther-Yates, Paradise Valley Community College, Phoenix
Wendy D. Roth, University of British Columbia
Phyllis E. Starnes, DNA Consultants

Description
Genetics has transformed many of our notions of race, ethnicity and identity. How do people in North America's melting pot of emigrants admixed with indigenous and African slave descendants self-identify when naming their primary and ancillary ancestries for official and unofficial purposes? The fundamental question of who you are and what you claim to be will be raised from the perspectives of marketing and consumer studies, sociology and direct-to-the-consumer DNA testing, genealogy (with a focus on the ethnic group known as Melungeons), epigenetics and medical marketing, and the special case of American Indian Descendants and Partial Descendants.

Stream: Identity and Belonging; the Politics of Diversity; Globalisation
Presentation Type: 90 minute Colloquium in English

Personal genetics: regulatory framework in Europe
from a service provider's perspective

Keith A Grimaldi, Markus P Look, G Antonio Scioli, Juan Coll Clavero, Stathis Marinos and Tassos Tagaris

European Journal of Human Genetics 19, 382-388 (April 2011) | doi:10.1038/ejhg.2010.189

Abstract
The purpose of this article is to give an overview and discuss the relevant regulations in place, or under consideration, regarding healthcare-related personal genetics services in Europe – this is a rapidly evolving field and in most European Union (EU) countries the regulatory framework is not yet clear. The review will be framed from the perspective of potential service providers (companies, health services and practitioners, including medical, nutritional, complementary, etc), the growing number of which will need to be aware of potential regulatory hurdles existing now and that may arise in the future. The main conclusion from the survey is that strict regulations regarding practitioner-delivered personal genetic-testing services are unlikely to be enforced over the next 5 years in most EU countries, with the exception of Germany. There is broad-based, but by no means universal, support for a strong voluntary code of practice as an alternative to government regulations to protect consumers and to enable all stakeholders to recognise serious and reputable service providers. On the other hand, there are influential bodies calling for strict regulation. As genotyping costs rapidly fall, it is likely that it will become routine and a major challenge that does not seem to be addressed by current debate on regulations is the emergence of companies offering/selling personal genetic services based on a customer's pre-existing genetic results and therefore no actual laboratory testing involved.

Genome-Sequencing Anniversary

Wrong. According to a correction in Nature, it was discovered by Swiss physician Friedrich Miescher in 1869, nearly a hundred years before. James Watson, Francis Crick and the less often mentioned Rosalind Franklin were responsible for determining DNA's structure, a double helix shape.

Discussion is accelerating in the United States and European Union to regulate private genomic testing that provides consumers medical information, according to Science magazine and the European Journal of Human Genetics. No mention is made in the reams of white papers about ancestry testing, but some of the pitfalls and bureaucratic morasses in the thinking about true genetic/medical testing are fairly ominous, if not silly.

"Although there has been speculation about the potential psychosocial harms of testing [that is, genomic medical testing], such as an increase in anxiety or encouragement of fatalistic behavior, there are, to date, few studies addressing these concerns," writes the reporters for Policy Forum in the Oct. 8 issue of Science. "The limited evidence tends to be reassuring, even for risk information associated with relatively serious ailments...however, the scope for potential harm from unnecessary or unproven treatment after genetic risk assessment is an important unstudied question" (pp. 181f.).

We commend scientists and physicians for finding a new field of study divorced from reality but have to wonder what they will do about ancestry testing once they have conquered and tamed Frankenstein's elder monster. We suggest the following guidelines:

• Labeling on Internet sites and Zen Shopping Carts that explicitly states, "The claims for this ancestry product have not been evaluated by the U.S. Government Accountability Office (GAO), U.S. Federal Trade Commission (FTC), House Energy and Commerce Committee, Food and Drug Administration, National Institutes for Health or Department of Bioethics and Humanities, University of Washington School of Medicine, Seattle, WA 98195 USA."
• Predictive ancestry information may be hazardous to your progeny.
• No animal has been harmed in the production or clinical evaluation of this ancestry test.
• If you discover you have ancestry you did not expect, take a deep breath. Then take a healthy dose of skepticism, followed by two aspirins and a glass of water.

We're waiting for the next gambit from the genius bar in Washington!

Preparing for the Future of Genetic Medicine

Alan E. Guttmacher et al.

Nature Reviews Genetics 11, 161-65 (February 2010)

Four experts with different insights into the field of genomic medicine answer questions about the prospects for using this type of information. The issues range from scientific to ethical and logistical.

 

Future Shock or Future Letdown?

New York Times reporter and DNA author Nicholas Wade raised an interesting question in his report on the bankruptcy last month of Iceland's deCODE Genetics, which attempted to make it possible for an ordinary consumer to buy the latest applicable information on the connection between their personal genes and their personal disease risk. The article was titled "A Genetics Company Fails, Its Research Too Complex."

In a report by Erika Check Hayden, the journal Nature gloated that the innovative personal genomics company deCODE Genetics went out of business, leaving the disposition of valuable genetic data unclear. "After struggling financially for years, the genomics company deCODE, based in Reykjavik, Iceland, filed for bankruptcy on 16 November," wrote Hayden, who follows the genealogy-and-genetics business beat for Nature. "The question now is whether other companies looking to commercialize genomics will follow the same path." 

DNAPrint of Sarasota, Fla., went down that path last February without even an obit in scientific journals.

But according to Kari Stefansson, deCODE's CEO, the fate of the data never was in play since it belonged to individuals who had their DNA tested at their own expense with the service lab of deCODE. The lab, Islensk Erfdagreining, continues to operate today "under the same data and privacy protections as ever, rooted in the Icelandic community and within a tried and tested regulatory environment," wrote Stefansson in a comment on the online report by Nature. 

Such an accidentally-on-purpose misunderstanding is more than sloppy science journalism or bad science. It reveals the fundamental hostility of academic geneticists and related disciplines to commercializing or even popularizing DNA. Geneticists should stop thinking they are doing God's work. They should give up the illusion that the great generality of humankind can only understand, profit from and benefit from their work if they, the scientific intelligentsia, condescend to allow it and specify the conditions and goals of its use. 

Those on the payrolls of governments and public institutions have received so much money they think now they can be governors -- governors of the applications of their research.