Personal Update – Social Media at Human Genome Organisation

by Dr. Hsien-Hsien Lei
Posted September 6, 2009 in Business of DNA, DNA in General

The pace around here at Eye on DNA is still nothing like it was before I went on maternity leave last June. But I have another great reason for continuing to neglect this space.

Since the start of my first personal blog in 2003, I have been an enthusiastic believer in the power of social media. When I began science blogging in 2005, I truly understood the importance of citizen media for informing, sharing, and inspiring.

This month I made another move into social media and began working at Soho Square as social media editor. At the same time, I became social media consultant to the Human Genome Organization (HUGO) which many of you know as the folks in charge of gene nomenclature.

But HUGO is more than just nomenclature, the Organization’s mission statement:

• to investigate the nature, structure, function and interaction of the genes, genomic elements and genomes of humans and relevant pathogenic and model organisms;
• to characterise the nature, distribution and evolution of genetic variation in humans and other relevant organisms;
• to study the relationship between genetic variation and the environment in the origins and characteristics of human populations and the causes, diagnoses, treatments and prevention of disease;
• to foster the interaction, coordination, and dissemination of information and technology between investigators and the global society in genomics, proteomics, bioinformatics, systems biology, and the clinical sciences by promoting quality education, comprehensive communication, and accurate, comprehensive, and accessible knowledge resources for genes, genomes and disease; and,
• to sponsor factually-grounded dialogues on the social, legal, and ethical issues related to genetic and genomic information and championing the regionally-appropriate, ethical utilization of this information for the good of the individual and the society.

To help accomplish the above, I will be assisting HUGO in setting up a blog as well as fostering an online (leading to a more active offline) community. I will have more news in the days to come. Meanwhile, please join us at the following:

• Human Genome Organisation on LinkedIn
• Human Genome Organisation on Facebook
• Human Genome Organisation on Twitter

Thanks for your support!

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Consumer Genetics Show 2009 in Boston

by Dr. Hsien-Hsien Lei
Posted November 19, 2008 in Business of DNA, DNA Testing

Here’s where most of my fellow DNA Network members would surely like to be next summer – the First Annual Consumer Genetics Show at the Hynes Convention Center from June 9-11, 2009.

Speakers include:

• George Church, PhD, Professor of Genetics at Harvard Medical School and founder of the Personal Genome Project (as seen on PBS)
• Dietrich Stephan, PhD, co-founder of Navigenics
• Jorge Conde, CEO, Knome
• Ryan Phelan, CEO, DNA Direct
• David Ewing Duncan, Bestselling author and award-winning journalist

Show objectives include:

• Regulatory issues
• Intellectual property considerations
• Interaction between biotechnology, molecular diagnostic, and pharmaceutical markets
• Role of physicians in helping patients interpret results from direct-to-consumer (DTC) genetic tests
• Effect of DTC market on molecular diagnostic laboratories
• Patient and consumer security (Blaine at The Genetic Genealogist recently wrote about security at Navigenics and 23andMe)
• Public relations and business strategies to optimize public perceptions of DTC genetic testing (given persistent negative opinions issued by various experts and professional societies)

Are you planning to attend?

Photo credit: Pieter Musterd

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Analysts Say deCODE Genetics Headed for Bankruptcy Court

by Dr. Hsien-Hsien Lei
Posted November 13, 2008 in Business of DNA

deCODE’s problems should not be any surprise to those following Iceland’s massive financial crisis. Morningstar’s Matthew Coffina has now listed deCODE stock as one of five that “look completely worthless.”

deCODE Genetics (DCGN)

From the Analyst Report: “DeCODE Genetics engages in some provocative research projects…. However, the company has yet to gain approval from the Food and Drug Administration for any of its products, and it is currently facing a severe liquidity crisis. It appears more likely to us that deCODE might no longer be a viable entity.”

via Genealogy-DNA-L

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Singapore Company DNA Dynasty Will (Not) Tell Your Children’s Future

by Dr. Hsien-Hsien Lei
Posted November 8, 2008 in Business of DNA, DNA in General

No matter what they say, DNA Dynasty will not and cannot tell you what your “kids (sic) innate talent” is via “DNA discovery.”

National Society of Genetic Counselors President Angela Trepanier would agree. From her interview with Karen Kaplan of the Los Angeles Times:

Should DNA tests be used to test for traits like intelligence, athletic aptitude or artistic talent?

I would not use DNA tests for any of those reasons. All of these traits develop as a result of genetic and environmental factors. So for instance, even if a person has a low genetic aptitude for music, if her parents routinely play music in the house, send her to lessons, take her to concerts, and she is a highly motivated person who does what it takes to accomplish her goals, she may become a concert pianist despite her genetic makeup.

I would not want to use information in any way that could pigeonhole a person’s potential or desires or prevent them from having the same opportunities that others have, and I think that genetic tests for these types of traits could do that.

By the way, doesn’t their company logo look awfully familiar? That’s right, it’s the same “DNA in a test tube” design that Ricardo Vidal made especially for The DNA Network.

For more opinions on DNA Dynasty, see:

• Think Gene
• Sciphu
• Genetic Future
• The Tree of Life
• Blind.Scientist
• Open Reading Frame
• Asiaone Health reports that the “Genetic Discovery Test” costs $1,788 SGD ($1,197 USD).

Update: DNA Dynasty has removed the DNA Network logo from their homepage.

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deCODE Genetics Sinking Low

by Dr. Hsien-Hsien Lei
Posted October 20, 2008 in Business of DNA

deCODE Genetics is still sinking after it laid off 15% of its workforce this past March. At the time, I was told that I misread CEO Kari Stefansson’s remarks on the potentially negative future of the personal genomics marketplace but now I wonder if I was on target after all.

According to Portfolio’s David Ewing Duncan, deCODE may have its stock delisted from the Nasdaq Stock Market if it can’t “raise its market cap over the $50 million minimum by October 30.” Recent negative publicity surrounding the launch of its breast cancer genetic test couldn’t have helped either. Duncan also says that other biotech companies may suffer if they can’t find more investors or credit. Some may even choose to sell out to Big Pharma.

Sounds bad.

With the global economic slowdown that could lead to a major recession, we are being warned to downsize our lifestyle and to downsize NOW before we lose our jobs, our homes, and who knows what else. As I’ve mentioned before, personal genomics companies rely on people having disposable income to spend on non-necessities.

Times are going to get rough and not just for deCODE.

Photo credit: Victoria Peckham

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Smart Genetics Shuts Its Doors

by Dr. Hsien-Hsien Lei
Posted October 6, 2008 in Business of DNA, DNA Testing

Direct-to-consumer genetic testing company, Smart Genetics, has gone out of business. The two-year-old company sold HIV Mirror and Alzheimer’s Mirror, DNA tests for HIV progression to AIDS and Alzheimer’s risk respectively.

I first wrote about HIVmirror in June 2007. Aimed at HIV+ individuals, the test analyzes the CCR5 Delta32 and CCR2-64I genetic variants previously shown to slow the progression of HIV infection to AIDS. Alzheimer’s Mirror examined the APOE gene.

CEO and co-founder Julian Awad first received funding for the company while at the Wharton School of Business. He was later profiled by CBS News for  Alzheimer’s Mirror and found that his own personal lifetime risk of Alzheimer’s disease is about 9 to 10 percent compared to 15% for the general population.

Ironically, he was also mentioned in a Wharton article from 2007 – Can Anyone Make Sense — or Money — Out of Personal DNA Testing?

Apparently not.

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23andMe DNA Tests for $399, Down From $999

by Dr. Hsien-Hsien Lei
Posted September 9, 2008 in Business of DNA, DNA Testing

For the same price as my Amazon Kindle E-Reader ($399 when I bought it, now $359), you can now get a whole genome scan from 23andMe. Originally $999, savings on DNA analysis chips were passed on to consumers.

From the press release:

23andMe is able to offer the reduced price thanks to technological advancements made by the company that provides its DNA scanning technology, Illumina, Inc. In addition, 23andMe also unveiled today the expansion of its custom genotyping content along with new social networking and community features, laying the groundwork for enhanced customer interaction.

When Amazon cut the price of the Kindle by $40, people who’d purchased it within the previous 30 days were able to get the difference refunded. Will 23andMe customers receive a similar refund?

NB: 23andMe also announced a partnership with Ancestry.com today.

via The Associated Press

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How To Make Money Selling Personal Genomic Services

by Dr. Hsien-Hsien Lei
Posted May 8, 2008 in Business of DNA

Given my limited knowledge of how to run a business (my sister’s the Harvard MBA of the family), I’d always thought having a bigger market is the key to success (as I alluded to in my previous post, Using Dispoable Income for Genetic Tests). There is, of course, another way of increasing company profits as Steve Jobs demonstrated with Apple:

Apple’s stock has shot up more than 70% over the past year, thanks to Jobs’ strategy of focusing on his most profitable customers and coming up with new things to sell them—the ultra-thin MacBook Air most recently—rather than just chasing more market share. [emphasis added]

~The 2008 Time 100

So what does this mean for personal genomics companies? Perhaps Knome with its $350,000 genome sequencing service isn’t too far off the mark.

NB: If you’ve got an extra $2500 that you don’t know what to do with, check out my list of DNA services you can buy with $2500.

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DNA Video: Leah Sparks of DNA Direct

by Dr. Hsien-Hsien Lei
Posted April 26, 2008 in Business of DNA, DNA Podcasts and Videos, DNA Testing

Interview with Leah Sparks, VP Business Development of DNA Direct from Doug Cress on Vimeo.

San Francisco-based DNA Direct* has created a web- and phone-based virtual genetics clinic. Genetic testing results can be complex, and inmost cases, do not provide definitive “yes” or “no” answers. DNA Direct focuses on personalized test result interpretation and supportive services.

*I’m the Genetic Information Specialist at DNA Direct.

(>> Start a discussion!)

Personal Genomics Takes a Bashing on Physician Oversight, Financial Backing, and Privacy

by Dr. Hsien-Hsien Lei
Posted April 21, 2008 in Business of DNA, DNA Testing, DNA and the Law

Direct-to-consumer genetic testing just can’t catch a break lately. We can expect blogs to be snarky but who knew Forbes and BusinessWeek could invoke a similar tone when writing about personal genomics?

First up, Forbes reveals that New York State’s Department of Health has sent letters to a number of personalized genetic testing companies threatening fines and jail time if they’ve been offering their services without a doctor’s involvement. The concern is that customers may not be able to understand their results and be potentially misled as to their risk of disease.

Both 23andMe and DeCode, which has not received a warning letter from New York so far, argue that the lab testing laws don’t apply because their products are not medical tests. “23andMe’s services are not medical … they are educational,” argues 23andMe spokesman Paul Kranhold.

That argument doesn’t mean spit to the New York regulators, who are concerned about the reliability of the online tests and their potential to send people rushing to their doctor demanding a cure for a fatal disease they may never get. [emphasis added]

BusinessWeek focuses on the financial aspect of the big players in personal genomics–23andMe and Navigenics–pointing out that both companies have received funding from Google. The company’s spokesman, Andrew Pederson, says that Google is “interested in supporting companies and making investments in companies that [bolster] our mission statement, which is organizing the world’s information and making it universally accessible and useful.” The difference between the offerings of 23andMe and Navigenics is portrayed as being interesting, broad-based information vs. valuable, medical-based information.

[Navigenics co-founder David] Agus, director of the Spielberg Family Center for Applied Proteomics at Cedars-Sinai Medical Center in Los Angeles, treats Hollywood celebrities, Saudi royalty, and others with deep pockets, but he conceived the company as a way to avert costly diseases.

Neither article mentions concerns over genetic discrimination and privacy which underlie discussions about regulation and access to genetic data. Two comments to the BusinessWeek article debate the issue.

Nicholas Bolibruch:

To all the naysayers, if you want nothing to do with this, just don’t use the service. Google cannot become big brother unless you voluntarily offer genetic material and make accounts on their system. The benefits of preventative health far outweigh the potential privacy violation. If you don’t like it, don’t use it, simple as that. I’m sure the person who gets genetic screening done and finds out they have a predisposition to some form of disease will be happier knowing they maybe able to prevent the problem in advance. When this saves someone’s life, all the naysayers will certainly have egg on their face.

Gerald:

You cannot say “if you don’t want it, don’t use it.” This creates a negative discrimination for non-users, making them suspicious to insurance companies, employers, etc. It’s the same reasoning totalitarian governments all over the world have always been using: “If you have no reason to hide, let yourself get registered by the authorities.” This opens all the door to neo-facist social structures and as a German for sure I will do all what I can to see history repeating itself, although with different names and forces of a globalised company now behind the same scheme of domination of personal liberties.

But perhaps privacy, confidentiality and consent for research will be moot in the future according to the proposal for an open-consent framework put forth by Lunshof et al. in Nature Reviews Genetics. More from DNA Network members:

• A new model for genetic privacy: you don’t have any at Genetic Future
• Private parts at Genomeboy
• Piracy or Privacy? Some Thoughts. at Gene Sherpas

If anyone ever organizes a biosciences startup school, they need to put regulatory affairs, investment choices, and privacy concerns on the syllabus!

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