2007 September

Don’t Sell Our DNA Say Cook Islanders

by Dr. Hsien-Hsien Lei
Posted September 30, 2007 in DNA Around the World

aitutaki cook islandsThe Karitiana Indians of the Amazon aren’t the only ones offended by the sale of their DNA. The Cook Islands has declared that it will no longer be “the guinea pig of the South Pacific.”

Foreign researchers wishing to conduct research on Cook Islanders, including the collection of their DNA, will have to abide by rules set by the Health Research Council of New Zealand and the office of the Cook Islands Secretary of Health Roro Daniel.

Sitaleki Finau from Massey University:

Some of us are fearing what happens to the specimen at the end of the analysis. Are they being used, are they being stored, are they being sold?

Pacific Islanders value body parts, body bits, body extracts, much more than say the average pakeha does.

The Cook Islands also want existing DNA samples being stored in the UK to be destroyed as well.

To learn more about research in the Cook Islands, see this presentation by Dr. Ngamau Wichman-Tou which is the last listed on this page for a workshop held during the 57th session of the WHO Regional Committee for the Western Pacific, 2006. And don’t miss the comments in response to my June post – Amerindian DNA Sells for 55 Dollars.

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What’s in your DNA? #12

by Dr. Hsien-Hsien Lei
Posted September 30, 2007 in In Your DNA

money 3Today we’ve got DNA for cheapness, editing, and Googling. DNA is on everyone’s mind.

Mahalo.com’s Jason Calacanis on going cheap:

I’m still really cheap. I have a hard time paying over $200 for a hotel room, I always try to take the low-level car, and I refuse to buy Starbucks coffee based on price. I wonder sometimes if I’m doing this to try to “keep it real” or if it’s a DNA thing.

Job description for a medicine and life science sub-editor at Cactus Communications:

The DNA of Cactus’ medicine and life sciences editing team comprises editors with master’s degrees or a PhD in microbiology, biotechnology, life sciences, biochemistry, etc.

Cory Doctorow of Boing Boing on Google turning evil:

…one of the things that I think is in Google’s DNA is a real tension about, on the one hand, being good to people, but on the other hand, acquiring as much information about them as they can, under the rubric that it allows them to be better to people.

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DNA Video: Part Three of the Human Genome Special on the Charlie Rose Show

by Dr. Hsien-Hsien Lei
Posted September 29, 2007 in DNA Podcasts and Videos, Personalities with DNA

This episode from the 2000 Human Genome Special on the Charlie Rose Show features Harold Varmus, Arnold Levine, and Savio Woo.

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Eye on DNA Exclusive Interview with Cancer Survivors Sandi Pniauskas and Carolyn Benivegna

by Dr. Hsien-Hsien Lei
Posted September 28, 2007 in DNA Testing, DNA and Disease, Personalities with DNA

How times have changed. Cancer has come from being taboo to being a subject of debate. Even better, ever more cancer survivors are now leading the charge for better healthcare.

Two ovarian cancer survivors, Sandi Pniauskas and Carolyn Benivegna, have joined to hold the Survivors Debate: The Past Decade in Ovarian Research. Two events are scheduled for October 27 in Michigan and November 3 in Toronto. Details are available at the Survivors Debate blog.

Earlier this week, Sandi and Carolyn participated in an exclusive interview with me for Eye on DNA. Learn more about what it’s like to have ovarian cancer and these women’s experiences with genetic testing. Their very personal stories remind us of the realities of cancer.

~~~~~
Hsien Lei: What is it like to have ovarian cancer as opposed to other forms of cancer?

carolynCarolyn Benivegna: Naturally, some forms of cancer are worse than others in terms of prognosis. I have no doubt that ovarian cancer will eventually kill me. I’m a fighter, though, and I keep beating it back with the biggest sticks I can find. I have been doing this for over nine years, though they said I probably wouldn’t live two years at the time of my diagnosis. Having ovarian cancer causes me to be angry at “the system” sometimes because ovarian cancer does not get its fair share of research funding or educational/awareness efforts. This has improved over the past decade, but it’s got a long way to go.

sandiSandi Pniauskas: This is an interesting question and indeed one which is very difficult to explain. I believe that most cancer patients/family caregivers might feel the same way at the time of the initial cancer diagnosis, so I will try to explain. I think the word ‘Cancer’ is first heard and then secondarily the type of cancer. As we know from public opinion polls, the vast majority of people do not necessarily understand that cancer is not a singular disease, but many different types and each one has its own set of treatments, prognosis and profile. People often ask what type of cancer, but after that, due to the lack of awareness and education, the detailed information does not ’stick’. Improvements in this area are being made, but it is my opinion, that we must change tactics because what we have been doing is not working for the vast majority.

I knew what ovaries were of course, but, had no idea that there was a cancer called ovarian cancer. Ovaries are indeed what makes women – women and this seems like such a rather insignificant statement . That is until we realize that not having ovaries (due to surgical intervention) makes a huge impact on the way we see ourselves, as women, not to speak of the complications which result and in particular premenopausal women, such as myself, due to surgical intervention. Similar to other cancers, it is not a cancer that you can ’see’, but not having ovaries, again, is not only biologically complex but emotionally as well. I guess I might try to equate this with cancer of the gall bladder. Trying to put this into context, as an example, may be gall bladder cancer patients and this is said with the greatest of respect for those patients. Patients, cancer or not, can live without a gall bladder but it is not typically associated with an extreme physical or emotional dysfunction.

With ovarian cancer comes the surprise that you don’t need to visit ‘that’ particular aisle of the drug store anymore. It’s a small issue in the larger picture, but part of every woman’s life. In fact, I think it took me 6 months to realize that the trek down this pharma aisle was no longer required. It’s a fact, which still to this day, strikes me with a small amount of humour. The larger less humourous issue is the lack of the ability to have children and while a select few ovarian cancers are spared, this is not the norm.

As to the broader question of other forms of cancer, I would have to say that now, when the words of ovarian cancer are mentioned, it brings a reaction of “Oh, that’s a bad one’” but on the other hand, often times, the general public believe that you take out the ovaries and get on with your life, along with maybe a little chemo. It is a sense of dismissal that is concerning and that indeed exists within our patient populations to some degree today. This is very concerning and very unfortunate.

Hsien: Sandi, you had a significant history of cancer in your family. How did that influence your approach to finding treatment for your own cancer?

Sandi: In fact, the realization came only after the fact in our situation. So, allow me to explain because it is important and sends a key message for the benefit of others.

When I was first diagnosed, and as the eldest of 5 siblings, I said I was ‘happy’ for the ovarian cancer diagnosis. Why ‘happy’? I thought, in a very uninformed way, that this meant that through my diagnosis I was ‘it’ for the family – that I had taken the ‘cancer hit’ for the family and so the others would be spared. In fact, 6 months and 1 year later two younger sisters also had cancer diagnoses. We were all in our ’40’s and 3 cancer diagnoses in a time span of 2 years, a fact which is quite stunning.

Since this time, I have come to realize that not only are we not alone, but indeed, there are worse families with many more incidents/deaths of cancers. After the diagnosis of cancer of the 3rd sibling, it dawned on me that something was not right. I remembered my Mother talking about her Grandmother and ‘being in bed all of the time because she was sick from cancer”. I pursued obtaining the medical death certificate for my Great-Grandmother and indeed, she died of colo-rectal and endometrial (uterine) cancers. My Grandfather also died of a cancer but I was unable to locate that information.

As with other families, there was no one still alive to ask for further information and this made it more challenging, but not insurmountable. The unfortunate part of all of this, in hindsight, is that it did not have to happen but it wasn’t necessarily the fault of anyone person, just the set of circumstances and timing. Unlike our situation, however, if there is any cancer diagnosis in the family it would be important to explore the family history right at the time of the initial diagnosis rather than letting it happen, so to speak. It might have saved my younger sister from her death, not to mention the suffering.

We are part of the genetic syndrome which is called the Lynch Syndrome and sometimes it is known as the ‘family cancer’ because of the wide range of cancers experienced in these families, ovarian cancer of which is one. Since I had already had my treatments, approach to treatment is an after-the-fact question. However, I had encouraged my younger sister to maintain a heightened surveillance program as her risk factors were the most similar to mine. At the time and before her diagnosis, I did not understand the connection and the risk for other cancers.

Would a heightened awareness and surveillance program have influenced her outcome? The answer at the very least is quite possibly.

Continue reading…

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DNA Quote: South African President Thabo Mbeki

by Dr. Hsien-Hsien Lei
Posted September 28, 2007 in DNA Quotes and Excerpts

thabo mbekiSouth African President Thabo Mbeki speaking during the launch of the laboratory of the International Centre for Genetic Engineering and Biotechnology (ICGEB) at the University of Cape Town:

This knowledge [of genetics] will increase our understanding of humanity’s travails over millennia and will, through this enlightenment, also have the added benefit of lessening ill-begotten and pernicious racial and ethnic prejudices among and between the peoples of the world.

IOL, September 10, 2007

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Eye on DNA Headlines for 27 September 2007

by Dr. Hsien-Hsien Lei
Posted September 27, 2007 in DNA Inventions and Gadgets, Eye on DNA Headlines

  • liz lerman danceThe Liz Lerman Dance Exchange Ferocious Beauty: Genome is running at the Premiere Dance Theatre in Toronto, Canada from September 27-29. From National Post:

    As she pondered the implications of the unraveling of the human genome, Lerman realized what a different future her daughter would be facing, a future potentially fraught with issues and difficult choices she herself had never had to confront.

    Read more about this performance in my previous post – Dancing to the Genome.

  • The drug companies listened to me after all.* The International Serious Adverse Events Consortium, made-up of seven pharmaceutical companies and academic institutions, has launched two studies to examine genetic markers which indicate a person’s risk of drug-related side effects. Members of the Consortium will combine their data, including DNA, to study serious adverse events (SAEs). Information from the SNP Consortium and Hap Map Project will also be utilized. (Press release)
  • Next month, Australian physicians will be handed a copy of Genetics in Family Medicine: The Australian Handbook for General Practitioners produced by the Genetics Education in Medicine Consortium. The handbook will also be available online at http://www.gpgenetics.edu.au (site still under construction at the time of writing).
  • The San Diego Union Tribune interviews Dr. James Watson. FYI, don’t ask to photograph Dr. Watson. He doesn’t like it!
  • Point-of-care DNA testing is coming closer to reality. NEC has developed DNA testing equipment the size of a briefcase that they say can analyze crime scene DNA in 25 minutes. NEC claims that it’s the world’s first portable all-in-one DNA analysis system that goes from extraction to analysis. Earlier this week, scientists in Singapore unveiled a prototype chip that can do something similar; the handheld device can detect viral DNA from throat swabs. (HT: Gizmodo)

*I’m just joking. I don’t believe for a second anybody listens to me. Not even my five-year-old. :P

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DNA Shopping: K’Nex Education DNA, Replication, and Transcription

by Dr. Hsien-Hsien Lei
Posted September 27, 2007 in DNA Inventions and Gadgets

knex dna

The prize for the September Eye on DNA contest is a ZOOB building set. Maybe for the one-year anniversary contest next April, I’ll give away this $44.50 K’Nex Education DNA, Replication, and Transcription set.

Product description:

Set includes 521 K’NEX Rods and Connectors and a 24 page full color building instruction booklet. Builds 7 DNA and mRNA molecules. Build any one from 19 combinations at once. Wonderfully flexible set allows students to build and learn using models that demonstrate phosphate groups, deoxyribose/ribose sugars, color-coded hydrogen bonds, four codons and color coded nucleotides. Set supports two students working as a team.

I gotta have one!

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Boston Celebrities Donate DNA for Genographic Project

by Dr. Hsien-Hsien Lei
Posted September 26, 2007 in DNA and Genealogy, Personalities with DNA

Twenty Boston celebrities will be participating in the Genographic Project. Of those donating their DNA:

  • Actor Ben Affleck
  • Mayor Thomas M. Menino
  • Boston Pops conductor Keith Lockhart
  • Soccer player Marshall Leonard
  • TV meterologist Mish Michaels

Genographic Project participant radio talk show host Ramiro Torres:

I just want to give a big shoutout to haplogroup A and let anybody else know we are the best. I don’t care if you’re the mayor, or a soccer player, or Ben Affleck – unless you are in my group, you are nobody.

Funny but also not so funny. Could that be the way we’ll discriminate against each other in the future?

Back to the not so serious. If you’re interested in buying celebrity DNA for your own use, Think Geek will send you some of Bill Gates’s DNA for $0.99 and Geraldo Rivera’s for $0.01.

…what we can do is let you purchase the DNA of your favorite celebrity (geek or otherwise) and hope that at some point in the future you can put that DNA to good use! Imagine some of the future possibilities, like: Celebrity-Milkshakes(tm), Celebrity-Pets(tm) and even Celebrity-In-A-Mylar-Bag-Boardgame(tm)!

howard sternBut you might want to think twice about using celebrity DNA for cloning:

A different scare scenario is a world filled with copies of famous people only. We’ll treat celebrity DNA like designer clothes, hankering for Michael Jordan’s genes the way we covet his Nike sneakers today. But even celebrity infatuation has its limits. People are not more taken with celebrities than they are with themselves. Besides, such a trend would correct itself in a generation or two, because celebrity is closely linked to rarity. The world seems amused by one Howard Stern, but give us a hundred or a million of them, and they’ll seem a lot less endearing.

For me, one Howard Stern is one too many!

HT: Genome Technology

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Just a Little Scared of Genetic Testing

by Dr. Hsien-Hsien Lei
Posted September 26, 2007 in DNA Testing, Polls About DNA

doctor & patient 22Nobody likes going to the doctor. (And if you do, I want to know why!) It’s inconvenient, time consuming, potentially expensive, and downright scary. You may think you’re going in for a routine check-up only to be told that you have a health condition that needs regular medication, like a partially clogged artery that requires statins. Worse still, what if the doctor proclaims you only have 8500 days until you’re dead?

So I found it curious when Navigenics* co-founder and chief science officer Dietrich Stephan made the following comment in a Bio-IT World interview about people’s reactions to being genotyped:

No one who’s taken it is frightened or scared when they get their results back. It’s all probabilistic — just like a cholesterol test. People have an intuitive [understanding of] testing and they’re not scared.

It’s one thing to be tested for a specific genetic mutation because you’re at high risk due to family history or other clinical indicators. It’s another thing to get a whole genome scan to highlight areas that may or may not cause you problems in the future depending on your lifestyle, environmental exposures, and level of impact conferred by the gene. Reminds me of what some relatives have told me in the past:

You think you’re healthy when you go see the doctor. No symptoms. Nothing. Then they do all those tests and find out there’s something wrong with you. And the next thing you know, you’re dead or dying!

The big hurdle to whole genome sequencing may not be the technology itself. Companies that focus on direct-to-consumer medical genetic testing, such as Navigenics, DNA Direct, and Myriad (see previous post about advertising for the BRACAnalysis genetic test), must also think about how to appropriately market their services and convince consumers that there is truly nothing to fear from having more genetic information.

I confess that I’m a little scared to know more about my DNA. Tell me I’m not alone. Are you scared too? Take the poll below!

{democracy:8}

Update: A comment left by InsaneDisabled in response to Esther Dyson’s piece about the Health 2.0 conference seems to agree with me:

Americans don’t want to know everything about their health. We treat our bodies like we treat our cars. We don’t need to know what’s under the hood. That’s the mechanic’s job.

*Disclosure: I work for DNA Direct, which occupies the same space as Navigenics.

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Human Genomics in the US Government

by Dr. Hsien-Hsien Lei
Posted September 25, 2007 in DNA in General

In the US, research supported by the government and research supported by the private sector often seem to be at odds. For example, the fierce rivalry between the Human Genome Project and Celera back when the human genome was being sequenced is well-documented. At the same time, both sides did end up helping each other in direct and indirect ways.

The Human Genome Project (HGP) explores this relationship in an article about the “working partnership” between the HGP and the private sector:

Substantial public-sector R&D investment often was needed in feasibility demonstrations before such start-up ventures as those by Celera Genomics, Incyte, and Human Genome Sciences could begin. In turn, these companies furnished valuable commercial services that the government could not provide, and the taxes returned by their successes easily repay fundamental public investments.

hugenetAlongside the publicity generated from the sequencing of the human genome, other government agencies started complementary projects. The Centers for Disease Control and Prevention (CDC) houses the National Office of Public Health Genomics, which is responsible for “the integration of genomics into public health research, policy, and practice in order to improve the lives and health of all people.” As part of their efforts, the Human Genome Epidemiology Network (HuGENet) was created to promote “global collaboration in developing peer-reviewed information on the relationship between human genomic variation and health and on the quality of genetic tests for screening and prevention.” Some of HuGENet’s current activities include:

  • e-Journal Club
  • Reviews of specific genetic variants and their associations with disease in the population, genetic tests, etc.
  • Fact Sheets that summarize a specific gene
  • Case Studies
  • Genotype Prevalence Database
  • Workshops and Meetings

personalized health care

The US Department of Health and Human Services (HHS) announced the creation of the Personalized Health Care Initiative in March 2007 that will incorporate genomic information.

HHS Secretary Mike Leavitt said in a speech before the annual meetings of the Personalized Medicine Coalition:

Personalized health care will combine the basic scientific breakthroughs of the human genome with computer-age ability to exchange and manage data. Increasingly it will give us the ability to deliver the right treatment to the right patient at the right time — every time.

Every one of us is biologically unique. We’ve always known that, but we haven’t had the knowledge or the tools to deliver health care at that kind of individual level. That’s what’s changing.

The four goals of the Personalized Health Care Initiative are:

  • Link clinical and genomic information to support personalized health care
  • Protect individuals from discrimination based or unauthorized use of genetic genetic information
  • Ensure the accuracy and clinical validity of genetic tests performed for medical application purposes
  • Develop common policies for access to genomic databases for federally sponsored programs

In addition, the HHS Personalized Healthcare Initiative aims to:

  • Establish a secured electronic system to exchange, aggregate and analyze key data from a large number of existing secure health care databases
  • Support the science and health information technology base and enable it to expand
  • Support efficient and effective drug development partnerships between public and private sector leadership
  • Help integrate the Personalized Health Care into the mainstream of clinical practice.

It’s extremely encouraging to see that the government is aware of the needs and demands of the genome revolution. But, I wonder how much communication there is between the various government organizations and the degree of overlap between goals. Then there is the question of collaboration between the private sector and the government. After all, it’s only natural that everyone will want to protect their turf.

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