Don’t Sell Our DNA Say Cook Islanders

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

The 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.

Tags: cook islands, genetics, genes, dna, science

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DNA Testing Too Expensive in Uganda

by Dr. Hsien-Hsien Lei
Posted August 8, 2007 in DNA Around the World, DNA Testing

Uganda may have gotten its first “DNA machine” but Josephine Nakato Matovu reminds us that costs are prohibitive for many people, including victims of sexual assault.

I know that the DNA machine could be utilised in solving crimes with the collection of DNA evidence to compare against suspects and/or offenders in sexual assault cases.

However, I am sure that few women and children are in a position to pay the large amounts of money for DNA testing that is required to prove their cases in court.

According to the UK Department for International Development , per capita income in Uganda is around $300 per year. With the average cost of paternity testing in Uganda set at $240*, it’s obvious that no average citizen could afford this. The question is, can the police?

DNA testing is not just too expensive for citizens of Uganda. The South Africa DNA Project was founded to address this issue and to support forensics DNA testing. Maybe charitable organizations, like the Bill & Melinda Gates Foundation, should consider tackling the availability of DNA tests not just for forensics, but for medical genetic testing as well. It’s certainly a more soluble problem than many other public health concerns.

*”At-home” paternity tests in the US where you collect your own DNA and send it in to the lab can be as little as $99.

Tags: uganda, south africa, dna testing, genetics, genes, dna, public health, forensics

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Eye on DNA Links for 26 July 2007

by Dr. Hsien-Hsien Lei
Posted July 26, 2007 in DNA Around the World, Eye on DNA Headlines

• Kromosoft names Eye on DNA their favorite genetics blog in this week’s issue of KromoNews! I’ve been a subscriber to this free weekly human genetics newsletter for a few months and particularly like their genetics “term of the week.” Kromosoft is a research services company with the motto: “Promoting Genetics Awareness for a Healthier Society.”
• Brandon Keim of Wired Science has been churning out genetics post after genetics post from Jackson Labs in Bar Harbor, Maine for Press Week during the second week of the 48th Annual Short Course on Medical and Experimental Mammalian Genetics. Can’t believe it’s been 10 years since I attended the Short Course myself. Two weeks of intensive genetics in a beautiful setting. It was heaven!
• Thank you to CourtTV’s Informer and Traces: Following the mtDNA Trail for adding Eye on DNA to their blogrolls.
• Whenever I make a trip to central London, I’m reminded of how bad the air quality is there. (Moscow air pollution is no better according to a friend who recently moved there.) UCLA researchers have found that microscopic particles in diesel exhaust interact with cholesterol to activate more than 1,500 genes involved in atherosclerosis, a risk factor for heart disease.
• Congratulations to Uganda! The Government Analytical Laboratories in Wandegeya has the first PCR machine in the country. One of the main uses for the machine is expected to be paternity testing for $240, which is less than the $400 charged in Kenya and $600 in South Africa.

Tags: genetics, genes, dna, uganda, kenya, south africa, kromosoft

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Mapping Middle Eastern DNA

by Dr. Hsien-Hsien Lei
Posted July 23, 2007 in DNA Around the World, DNA and Genealogy

As a Chinese-American, I haven’t found genetic genealogy to be all that intriguing. That’s mostly out of ignorance since I haven’t done much research into my personal family history let alone China’s long history and lineages. Genealogy DNA testing companies also tend to focus very little on East Asians with only occasional stories about Y-DNA testing for a relationship to Genghis Khan or Confucius.

People of Middle East descent may feel the same way but hopefully not for long. Eastern Biotech & Life Sciences in Dubai have signed an agreement to be part of the Genographic Project via Family Tree DNA. They plan to create a database for the Middle Eastern population. Y-DNA and mtDNA tests are offered at DNAancestry.ae although much of the information there is a duplicate from Family Tree DNA and not specific to Middle Eastern populations. For example, their case studies are of Donald Trump, Brat (sic) Pitt and Pamela Anderson which actually take you to a blank form at Ancestry.co.uk!

On a more serious note, I wonder if knowledge of genetic similarities and differences between these countries could influence their relationships with one another – for the better or for the worse.

NB: According to WorldAtlas.com, the Middle East includes these countries: Afghanistan, Bahrain, Egypt, Iran, Iraq, Israel, Jordan, Kuwait, Kyrgyzstan, Lebanon, Oman, Pakistan, Qatar, Saudi Arabia, Syria, Tajikistan, Turkey, Turkmenistan, United Arab Emirates, Uzbekistan, and Yemen.

Tags: middle east, genetics, genes, dna, genealogy, genographic project, family tree dna

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Medical Tourism for Preimplantation Genetic Diagnosis (PGD)

by Dr. Hsien-Hsien Lei
Posted July 16, 2007 in DNA Around the World, DNA Testing, DNA and Disease

All parents want to protect their children from harm especially when it comes to serious illnesses. For families who have a history of inherited diseases, there is now the option of preimplantation genetic diagnosis (PGD) where one cell is taken from an early stage embryo and genetically screened for the disease-causing mutation. Currently, PGD can be performed for a long list of diseases including Huntington’s disease, breast cancer, neurofibromatosis, cystic fibrosis, and polycystic kidney disease.

This past weekend, the Brookhyser family was profiled in The Orange County Register. Stacy Brookhyser carries the Huntington’s disease (HD) gene and not only is she destined to develop the disease herself later in life, she has a 50-50 chance of passing on the gene to each child. But with the help of PGD, she and her husband were able to select embryos that are free of the HD gene and now have two healthy twin girls.

Last year, a reader in Malaysia, under the pseudonym Rica Lode, contacted me asking for more information on PGD for neurofibromatosis (NF) type I. Here’s what she said about their search for PGD (reprinted here with permission):

I am in my 30s, born and bred in Malaysia. I’ve been married for a few years now with no children yet. I would never imagine one day how genetics would play a strong role in our lives. Genetics, bioethics has never been a part of my vocabulary before until I came across this term, preimplantation genetic diagnosis in the newspapers recently. It appears to be the latest “word” in the world due to “designer babies”. This procedure allows parents to select the gender of their baby effortlessly.

To me and my husband, it’s a God-send solution to our dilemma. Because this procedure ensures we would have a healthy child as it is able to detect genetic disorder. My husband have a genetic disorder condition known as Neurofibromatosis Type I, where benign tumours would grow externally and/ internally on the peripheral nerves. It is a gene mutation on chromosome 17. There’s no known cure. There’s a 50% chance this would passed onto our next of kin.

Rica and her husband searched all over Asia for affordable and available PGD. The situation is much the same in Europe. At the annual meeting of the European Society of Human Reproduction and Embryology, a study on PGD patients travelling abroad for treatment found that patients had the following reasons for searching internationally:

• PGD was banned in their own country (PGD is banned in Ireland, Switzerland and Germany.)
• Quality of treatment
• Test availability
• Expertise in certain diseases
• Cost and length of waiting lists in their home countries

According to the study, the situation is untenable for both healthcare providers and patients where free exchange of information is impossible. Doctors are afraid of being prosecuted and patients aren’t able to access all the medical treatment, counselling, and support they need once they leave the country where PGD was performed. Mr. Lawford Davies, a solicitor specialising in reproductive and genetic technologies, recommends that members of the European Union develop a consistent policy across all countries and regulate rather than prohibit PGD. (HT: PHG Foundation)

In the end, elective procedures like PGD will be subject not only to legal restrictions, but also to market forces. Medical tourism is an increasingly lucrative business for the uninsured and the underinsured. There may not be a way around this but at least the procedure is available somewhere somehow.

Tags: genetics, genes, dna, diseases, illness, health, preimplantation genetic diagnosis, pgd, medicine

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Beware of Genetic Bioviolence

by Dr. Hsien-Hsien Lei
Posted July 9, 2007 in DNA Around the World, DNA and the Law, Genetic Engineering

In contrast to James Watson and Freeman Dyson, Barry Kellman is a DNA pessimist and might I say, a scaremonger as well. Over the weekend, he warned us of the potential dark side of genetics in the San Francisco Chronicle. It’s enough to make me think we need to shut down genetics research RIGHT NOW until we can enact enough laws to keep the malcontents and their biological weapons at bay. But, of course, all the fear is just build-up to…a new book!

Bioviolence: Preventing Biological Terror and Crime is slated to come out next month. The book summary makes it sound like a primer and directory for bioterrorists*:

• What diseases should you use for “hostile purposes”? Smallpox, anthrax, or ebola.
• Who can help you create disease weapons? Rogue States and groups like Al-Qaeda.
• Who isn’t doing a good job of developing a strategy to “improve humanity’s security”? Law enforcers, scientists, public health officials, nations, and international organizations like the United Nations. Pretty much everyone!

At least one world leader is taking steps to protect his citizens – Russian President Vladimir Putin. What a star. Prof. Kellman tells us that President Putin has banned the export of human medical biological materials to ensure that his citizens’ genetic data won’t be used for making ethnic-specific biological weapons that can be aimed at them. Also consider this fair warning for people of Russian descent spread all over the world. In fact, if you’re of any ethnicity at all, be afraid, be very afraid:

It will soon be possible to manipulate viruses or bacteria so that they predominantly affect only Jews or Han Chinese or, yes, Russians. Even if that weapon affected only 10 or 20 percent of a group, the effects could be devastating.

Now he just had to go and mention the Chinese. Excuse me while I go don my biohazard suit.

*OK. I admit to tweaking it for satirical purposes.

Tags: vladimir putin, bioviolence, barry kellman, biological weapons, terrorism, bioterrorism, genetics, genes, dna

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Dr. Marek Minarik of Genomac on Genealogy DNA Testing in the Czech Republic

by Dr. Hsien-Hsien Lei
Posted July 3, 2007 in DNA Around the World, DNA and Genealogy

The controversy continues! After Dr. Ludvik Urban’s comments on genealogy DNA testing in the Czech Republic, Dr. Marek Minarik of Genomac contacted me and had the following to say about his company which offers Y-DNA and mtDNA testing.

~~~~~
We are a private family-based business that has started from absolute scratch back in 2001. It may sound as a cliché, however, it is so. My sister and me were absolute outsiders in Czech genetic, forensic or even medical communities with no money no influential friends and no connections. At the beginning we haven’t privatized nor “inherited” any former hospital laboratory inventory, we haven’t “utilized nor leased” any university or other academic labs spaces while still being employed there (a favorite way to start a biotech company in the Czech republic). We have rented an empty basement and bought everything from pipettors and centrifuges to PCR machines and a second-hand DNA sequencer. Never in our company life we would have a liberty of regular payments from government (such as the payments for testing by health care insurance companies). We have built this company based on research projects and we have partially funded our scientific endeavors by commercial DNA testing(paternity, preventive, ancestry). Since 2001 we regularly publish 1 – 2 original scientific papers in impacted journals (IF>1) per year (first and/or last authorship) and co-author 1 – 2 with others. We were the second private laboratory in Czech to offer paternity testing and the first to offer ancestry testing. Back in 2005 we have voluntarily introduced a code of ethics in genetic testing. I am absolutely convinced that since our day one we have never broken any laws, we have never exhibited any kind of non-ethical or non-moral conduct.

Now to our ancestry testing. We have started Y-typing back in May 2006 and mitochondrial typing in March 2007. Our original product was (similar to Oxford Ancestry) testing a 12 Y-chromosome marker set and returning basically a Y-map showing matches and non-matches. Later we have started to add individual interpretations, which is what we do now. Never in my previous scientific or commercial life have I experienced such a hostility as when we finally got a break-through with ancestry testing after a media exposure in September 2006. An initial true excitement from the fact that someone is offering such service in Czech was quickly replaced by relentless criticism of overpricing, misrepresentation of data, etc. coming from individual genealogists and, later, especially from competition who also started to offer similar tests. We have originally charged CZK 1190,- ~$55 for Y-haplotype, since 2007 we charge CZK 2450,- ~ $110 for Y-haplotype plus individual interpretation (sorry for the mistake by Kim Ashton of Prague Post). As for the interpretations we inform customer about frequency of their haplotype and give them information about a geographic localization with the highest density of the associated profile. That is all, we do not tell people they are Slavic or German.

Continue reading…

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South Africa’s DNA Project Launches Website

by Dr. Hsien-Hsien Lei
Posted June 30, 2007 in DNA Around the World, DNA and the Law

South Africa has a National DNA Criminal Intelligence Database that only stores samples collected from crime scenes and suspects. There is no “convicted offender database” such as the ones in the US and UK that additionally hold DNA from people who’ve been charged with a crime, convicted criminals, current prisoners, parolees, people on probation, and registered sex offenders. The reason given for the reluctance of South African law enforcement to collect DNA from convicted offenders is the “assault” experienced by a convicted offender when blood is drawn. Of course, now that it’s possible to collect DNA from a cheek swab or other less invasive means, this should no longer be a concern.

 According to the South African DNA Project, which launched its website earlier this month, DNA profiling in South Africa has been hampered by:

• Insufficient DNA profiling equipment
• Lack of funding
• Embargos on processing crime stains and DNA profiles without a suspect
• Inadequate laboratory capacity
• Outdated information systems
• Overwhelming caseloads
• Lack of training

The DNA Project was established in 2004 after the murders of John Lynch and Leigh Matthews. Since then, the DNA Project has sought to raise funds, educate the public, increase awareness of forensic science, change legislation, and otherwise encourage the Forensic Science Labs. The DNA Project website is an excellent resource for anyone interested in the use of DNA in law enforcement. May they achieve their objectives to use DNA for solving crimes as well as deterring them.

Tags: south africa, dna project, john lynch, leigh matthews, genetics, genes, dna, forensics, forensic science, crime

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Amerindian DNA Sells for 55 Dollars

by Dr. Hsien-Hsien Lei
Posted June 28, 2007 in DNA Around the World, DNA in General

Going once. Going twice. Sold! DNA for $55.*

The Karitiana Indians of the Amazon feel as if part of their heritage has been auctioned off by researchers who misled them. They first gave their blood in the 1970’s after making contact with “the outside world.” In 1996, they again gave samples of their blood in exchange for medicine, which the Karitiana Indians claim they never received. Similar to the American Indians who were studied to investigate the relationship between the MAOA gene, childhood sexual abuse, and alcoholism, Amazonian Indians live in closed communities where their lifestyle, living environment, and disease inheritance patterns make it easier to conduct genetic studies.

But the extent to which their genetic data would be used was not clear to the Karitiana Indians when they donated their blood. To their shock and anger, they recently discovered that their DNA is now being sold via the Coriell Institute for Medical Research which is funded by the US National Institutes of Health and other givernment agencies. You can obtain a listing of 25 cell cultures from the Karitiana Indian people with details such as race, age, gender, and disease status. A 1.0 ml cell culture costs $85 while 0.05 mg of DNA costs $55.

The situation is not as sinister as it seems, however. The Corielle Institute sells specimens only to scientists who sign an assurance form agreeing to guidelines that specify:

1. That the biomaterials will be used in compliance with all regulations protecting human subjects.
2. That the biomaterials or any products derived from them will not be commercialized.
3. That the biomaterials will not be distributed to a third party (that the researcher will not “share” with a colleague) without authorization by the Coriell Institute for Medical Research as agent for the National Institute of General Medical Sciences.

The Karitiana Indians are not satisfied and along with other Amerindian groups, they claim that selling or using their DNA in unapproved ways is biopiracy. For example, many indigenous groups have expressed their distrust of the National Geographic’s Genographic Project, including the Maori of New Zealand and Alaska natives who want National Geographic to stop “sucking indigenous blood.”

Continue reading…

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More About Genomac Genealogy DNA Testing in the Czech Republic

by Dr. Hsien-Hsien Lei
Posted June 25, 2007 in DNA Around the World, DNA Testing, DNA and Genealogy

What do I know about DNA testing in the Czech Republic? Virtually nothing except for what I dug up last week on Genomac and Forensic DNA Service. Ludvik Urban has first hand knowledge and set me straight over at RootsWeb.

Dr. Lei a <irony>”little bit”</irony> warps the facts.

1. “ancestry tests costing about $55.80″

Test by Genomac costs 2x more [2500 CZK].

I got the figure from the Prague Post article I quoted.

2. “Genomac is not much different than DNA testing companies in other countries.”

Maybe yes, maybe not. But in the Czech Republic, it is prohibited by law to keep DNA samples of individual persons. Genomac does keep samples without government permission.

3. “Any commericial database of DNA profiles must be registered.”

The Genomac’s database is not registerd.

4. Genomac as a result of its genographic test sells a map downloaded from YHDR database with erased copyright and without YHDR permission.

I bought Y-DNA test at Genomac for me and also from some of my relatives last year. As a admin of Genebaze, a genealogy website, and in the name of genealogy community I offered to Genomac acooperation, especially in a search for common ancestors. It refused. By the same time [last September] Genomac decided to sell ONLY YHDR maps, NOT markers values! After my query it started to sell marker values for aditional raised price.

I hope Genomac will soon fulfill the law and open its database. It promises that search the its database will find one’s ancestors and relatives.

What makes me sad is the fact that Genomac still refuses to prepare testfor more than 12 markers [<cite>"12 is enough, whe YHDR as a reference hasless markers"</cite>] and also refuses to store data about most distant ancestors.It refuses to evaluate obtained haplotypes by any haplogroup predictions. Instead of it, it produces a “certificate of origin” with these results:

“west-slavic”, “romanic”, “south-slavic”, “scandinavian-german”,
“mediterran-balkanic-north african”, “mediterran-near east-asian”,
“baltic-scandinavian-siberian” and “mediterran-kaukasic”.

Dont laugh, it’s true!

As a result of its very efficient marketing, people refuse to make test for more than 12 markers “because they have from Genomac all data”.

Ludvik Urban,
Genebáze and its amateur Czech and Slovak Y-DNA, mtDNA database

Thanks for letting us know more about the DNA testing scene in the Czech Republic, Ludvik! I will try to contact Dr. Marek Minarik to get his side of the story.

Tags: ludvik urban, marek minarik, genomac, czech republic, genetics, genes, dna, dna testing, genealogy

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