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

If the facts don't fit the evidence
change the facts . . .

We always suspected the genetics community of clinging to stale dogmas and being slow to acknowledge emerging new evidence about American Indians. But we did not dream that their officiousness extended to changing the information given by test subjects to bring it into conformity with preconceived conclusions.

Not until we heard Marcy's story.

"Over the years, I've heard complaints that [a DNA testing company] is not really responsive when you have questions about unexpected results," Marcy said. "They usually suggest further testing, which of course, means more revenue to them.

"I've had some major disagreements with [a DNA testing company] over how they list results for mitochondrial haplogroup ancestral origins . . . . I found out they were taking dozens of T2's who had listed their earliest known female ancestor as being from America or the United States, changing this and placing them in the 'unknown' category. They claimed that because our haplogroup was designated European, our ancestors couldn't be from the United States!

"Now this was nonsense, because at the same time, they allowed people to claim other similarly-colonized western countries, like Cuba. It's my opinion that if participants list a country of origin for their earliest known female relative, that should be what is on the web page, not something assigned by [a DNA testing company] because as they told me, it may 'confuse people,' or contradict current scientific data.

"As a consequence [the DNA testing company's] publicly reported ancestral origins has nothing to do with our haplogroup's ancient Cherokee clan mother. The chips should fall where they may."

Now this is not professional behavior on the part of a DNA testing company and it prevents new findings from coming to light.

In a study of 52 individuals claiming direct maternal descent from an American Indian woman, mostly Cherokee, we found that they were unmatched anywhere else except among other participants. Haplogroup T emerged as the largest lineage, followed by U, X, J and H. Similar proportions of these haplogroups were noted in the populations of Egypt, Israel and other parts of the East Mediterranean.

DNA testing companies do a disservice to their customers and to science by failing to call results as they appear without doctoring them. It is time geneticists stopped bringing all American Indians over the Bering Straits and forcing test subjects into the Procrustean bed of outmoded theory.

For more on "anomalous" American Indian haplotypes, visit our Cherokee DNA Studies, now in Phase II testing.

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.

In a paper to be delivered at the American Marketing Association's meeting in Washington in June, Elizabeth C. Hirschman estimates that the number of people who have purchased a DNA test now exceeds 1.5 million. Her work suggests that the value of the market (excluding paternity testing) in 2011 will reach nearly $150 million in sales. That seems like too big an industry to escape government oversight, and it's true that several scientists have targeted the direct-to-the-consumer DNA testing business for criticism, particularly personal genomics companies like 23andme.

Before another academic grant gets written to send out another industry questionnaire, however, marketing professionals and public policy analysts ought to have a look at Hirschman's new case study, destined, we think, to become a classic. "Altruistic Economics and Consumer Cooperatives in the DNA Marketspace" sketches a vibrant picture of DNA test takers busy following up on their results in social networking sites like DNA Communities and even joining in the design process for product improvements by the leaders in the industry. No unhappy campers there!

The proof of the pudding is in the eating. Rather than mount yet another policy making roundtable, would-be regulators should just order some of the DNA tests available from today's leading companies and judge for themselves how accurate or valuable or harmful they are. That makes a lot more sense than writing another food review for a restaurant they do not intend to patronize, or for a cuisine that is not to their taste.

The AMA's Marketing and Public Policy Conference is the premier national and international event for marketing academics, public policy makers, and marketing practitioners interested in social and public policy.

Another point made by the paper is that "The industry has completed the introduction, early growth stages and consolidation phase of its life cycle . . . . It is a mature field facing few new technology thresholds, and it is still very much confined to the United States, Canada and England." That having been said, it may be too late to regulate the industry. It seems to be doing fine all by itself. Like the pharmaceutical and computer industries, the DNA marketspace is an American phenomenon we should all just basically let thrive and be proud of.

Altruistic Economics and Consumer Cooperatives in the DNA Marketspace

 

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!

To Do DNA or Not to Do DNA?

Much Ado about Nothing

American education is in such a state of decline and confusion that the following new program, with all its pros and cons, seems tantamount to a mad hatter's tea party. We reproduce a description of it from Nature in all its carefully nuanced and agonizing detail. We suggest that rather than fretting over whether DNA testing companies might use predatory marketing on teenagers or students be pressured into making purchases and be psychologically damaged by DNA results, the school authorities worry about real threats like the fast food poisons served up in the cafeteria franchises on their campuses. Or overpriced and watered down textbooks. Or alcohol in dorms. Or date rape. Or just about anything else.

A DNA education

Nature 465: 845-46 16 June 2010

Taking personal genetic testing into the classroom brings ethical and legal sensitivities to the fore. Although personalized genetic testing is still very new and controversial, its increasing use in health care seems inevitable — a trend that makes it essential to give consumers and physicians a better education in the technology's strengths and weaknesses.

That was the rationale behind an announcement made last month by the College of Letters and Science at the University of California, Berkeley. This year, instead of sending its incoming students a book for later discussion in class, the college will send them a kit to swab their DNA. If they so choose, students can send in their sample to be analysed for three common gene variants that indicate how an individual metabolizes alcohol, lactose (found in dairy products) and folic acid, a vitamin common in leafy green vegetables.The impulse behind Berkeley's announcement was commendable.

But officials there were too hasty in designing the programme, as evidenced by the firestorm of criticism it triggered and the changes the university has instituted in response. For example, each student's kit will now include not just details of the measures being taken to safeguard and anonymize the data and descriptions of the genes to be tested, as originally planned, but also information about the ethical and legal issues surrounding genetic testing. In addition, the university has modified a contest that accompanies the programme: the prize will no longer be a full genetic test conducted by a commercial testing company, which could be perceived as an endorsement of such firms, but will instead be cash.

Finally, organizers have decided to hold off revealing the tests' results until just before a lecture at which the benefits and limits of genetic testing, as well as the three chosen genes, will be discussed in detail. They will also give an accompanying lecture on the ethical and social dimensions of genetic testing. And students will be able to seek private counselling about their results if they wish.

Although it was wise of Berkeley to make these improvements, concerns remain. The university contends, for example, that there will be no pressure on students to participate in the genetic testing. Not only will they be told it is entirely optional, but students — or in the case of those under 18 years of age, their parents — will sign an informed consent document. Moreover, faculty members will never learn which students participated and which did not. But critics still worry about indirect pressure: the very fact that the kits are being sent to all of the college's incoming students could give them the impression that their participation is expected, in which case their choice may not feel so free.

A telling contrast in approach has been provided by Stanford University in Palo Alto, California, which announced a similar course designed for medical students shortly after Berkeley announced its programme. Recognizing the potential for controversy from the outset, Stanford officials first appointed a task force of basic scientists, clinicians, legal professionals, genetic counsellors, ethicists and students who spent a year designing precautions against coercion and conflicts of interest by the institution, and working out access to counselling.

The result is a well-thought-out programme — which also includes a research component designed to test a commonly held belief: do students truly learn better when the information presented to them is of personal relevance?

That said, the Berkeley and Stanford programmes are both still experimental. No one has all the answers to the issues they raise, which is why designing such curricula will involve constant refinement and evolution. It is shortsighted for critics to oppose such endeavours on the grounds that experts don't yet know how to interpret genetic information or how to integrate it into medical care. That is changing rapidly — and these two programmes are only the beginning of a long conversation that needs to happen on campuses worldwide.

In an article titled "Indian Tribe Wins Fight to Limit Research of Its DNA," Amy Harmon reports that Arizona State University has agreed to pay the Havasupai Indians of the Grand Canyon $700,000 and return blood samples collected from them for diabetes studies in the 1990s. The university's Board of Regents apologized to the tribe for...well, that part of the story is not clear. Not informing them that the samples might be used for "wider-ranging genetics"? Not informing the subjects that they reached negative conclusions and found no "diabetes gene" as they believed they had in a Pima Indian study? Not getting permission (no, that was done with simple-to-understand, signed consent forms, as was proper)? Coming to different conclusions about the Havasupai's origins than their myths and legends? Allowing people to "get degrees and grants" using "our blood"? Implying that the Havasupai are inbred? One Havasupai woman found that offensive.

Many tribal members were disgruntled because they were still suffering from diabetes after the university "took their blood."

Sorry, Havasupai Indians, a project participation consent form is not a treaty. But if you signed it, you should honor your word. You cannot go back now and require the researchers who use your samples to come to research conclusions that suit you and be silent about those that do not. Science (and society) doesn't work like that.

The tribe's dictates to the University were mercenary and the University's decision to pay the tribe off, wrong. The case sets a bad precedent and places another barrier between Indian peoples in remote areas and the real world. 

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.

 

Nature 463/298-299 (21 January 2010)

Abdallah S. Daar in reviewing this new book by NIH director Francis Collins maintains that “we have entered the era of rapid, inexpensive genetic testing and genome sequencing” and must simply come to terms with the phenomenon of personal genomics and consumer genetics. In the next decade, he predicts, the cost of sequencing a human genome will drop to a few hundred dollars. The cost for the Human Genome Project was about $3 billion over 13 years.

The Language of Life:  DNA and the Revolution in Personalized Medicine

By Francis S. Collins

Harper/Profile. 2010. 368 pp/288 pp.

$26.99.

Dr. Yates was interviewed by WBRC reporter Jeh Jeh Pruitt of FOX News Alabama at the company offices in Phoenix on October 22. The report was broadcast on affiliate stations in late November. Watch it on MyFoxAlabama.com.