by Dr. Hsien-Hsien Lei
Posted April 22, 2008 in DNA Around the World, DNA Testing, DNA and the Law
- Rick at My Biotech Life hosts Gene Genie : the better late than never personal genomics special edition.
- Please welcome Pamela Ronald at Tomorrow’s Table to The DNA Network. She’s our 53rd member!
- Congratulations to Trisha on the relaunch of the Ideas for Women blog.
- Molecular biologists are in the movies. Peggy at Biology in Science Fiction looks at Splice starring Adrien Brody and Sarah Polley scheduled for release in 2009.
- Auckland University professor Andrew Shelling says personal genomics companies are offering “health horoscopes.” On the other hand, he admits that access to genetic testing in New Zealand is very limited.
“New Zealand is doing an appalling job of providing adequate genetic testing. We’re well behind Australia and the rest of the world.”
So what’s an info-seeking person to do?
- Here’s a genetic genealogy quagmire. DNA testing of children from the polygamist religious group in West Texas to sort
our* out family relationships has commenced. Problem is, many of the children are closely related and have parents who are genetically related as well.
Because of the groupâ€™s isolation, Dr. Einum said he thought it was likely that the parents of any given child were related by a common ancestor, and that any man examined as a possible father could share genetic traits with many other men in the group.
*No, I’m not affiliated with the FLDS.
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.
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.
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!
by Dr. Hsien-Hsien Lei
Posted April 13, 2008 in DNA and the Law
Most people who buy DNA test want to know the truth but there are others who want to evade it.
In 1992, Dr. John Schneeberger implanted a plastic tube in his arm filled with someone else’s blood. He had been charged with two counts of sexual assault in Saskatchewan, Canada. When ordered to provide a blood sample, Schneeberger drew the blood himself from the plastic tube instead of his vein. He was eventually deported and sent back to South Africa.
In March 2007, four Massachusetts men were charged with attempting to tamper with DNA testing. They apparently tried to trade ID bracelets when having their blood drawn but was caught when their fingerprints didnâ€™t match the samples. I’m not sure what became of them but they faced a sentence of up to five years in jail.
And in a paper published in the Journal of Forensic Sciences, Dr. Jose Antonio Lorente Acosta at the Laboratory of Genetic Identification of the University of Granada found evidence of fraud in a paternity test case. The suspect had applied another person’s saliva to the inside of his mouth prior to having DNA samples taken with a cotton swab.
And what about accurate DNA analyses that are reported INaccurately? I’m sure there are unscrupulous DNA testing services worldwide that will give people any results they want for whatever purposes they need it for, e.g., immigration. Not to mention people like Simon Mullane, a British businessman who made-up paternity test results rather than actually doing the testing. Makes you think twice about the accuracy and validity of DNA testing, doesn’t it?
by Dr. Hsien-Hsien Lei
Posted March 26, 2008 in DNA and the Law
Allan Wernick of New York Daily News answers an anonymous question about the use of DNA testing for U.S. immigration.
Q I am a U.S. citizen. I want to petition for my father, but his name isn’t on my birth certificate. Must we have a DNA test to prove our relationship?
Name Withheld, Brooklyn
A A DNA test is the best way to prove a father-child relationship. Properly done DNA tests are 99.9% accurate in determining fatherhood. However, the test is expensive. An alternative is providing “secondary evidence.” Examples of secondary evidence are affidavits from your mother or a friend or relative who has knowledge of your relationship, an affidavit from someone present when you were born, or a copy of a page from a family Bible or other document recording your birth.
Sometimes using secondary evidence causes delays. What would I do? If your father is in the United States and interviewing for permanent residence here, try proving your relationship without the DNA test. If he will be applying at a U.S. consul abroad, getting the test before he goes to his interview may be worth it. A U.S. consular officer may question your relationship even if the USCIS has already approved your petition. If that happens, your father could get stuck abroad for a long time. Of course, if money is not an issue for you, go ahead and do the test. That way you can be sure that no one will question your relationship.
Wernick refers readers to the U.S. Department of State Bureau of Consular Affairs – DNA and Parentage Blood Testing. The document explains the different types of parentage testing, including nuclear DNA testing and mitochondrial DNA testing. There’s also a discussion of parentage blood testing that analyzes basic red cell antigens, extended red cell antigens, red cell enzymes and serum proteins, and white cell enzymes. I’m assuming parentage blood testing is less expensive than DNA testing or there’s no reason why applicants would not opt for the more straightforward DNA tests.
Note that for legal purposes, those $99 at-home paternity tests won’t suffice because they are undocumented and DNA samples are collected at home and mailed by the participants. When DNA test results are required by a court of law or for immigration purposes, a chain-of-custody DNA test is needed in which an uninvolved third party would vouch for the identification of the parties being tested, including photographs and fingerprints. DNA samples are clearly documented and tracked throughout the process. For more information, see these top 5 commonly asked questions about chain-of-custody DNA testing from DNA Diagnostics Center*.
*I have no direct affiliation with this testing company.
by Dr. Hsien-Hsien Lei
Posted March 25, 2008 in DNA and the Law, DNA in General
Yesterday, I touched on how consumers can prepare to use their genetic information to gain access to personalized medicine. On a related note, consumers should also be prepared to consider options for contributing their genetic information to research efforts. Commercial companies, such as 23andme, have made no secret of their desire to use their customers’ data for “the greater good.”
While we measure many hundreds of thousands of data points from your DNA, only a small percentage of them are known to be related to human traits or health conditions. The research community is rapidly learning more about genetics, and an important mission of 23andMe is to conduct and contribute to this research. By obtaining 23andMe’s services, you are agreeing to contribute your genetic information to our research efforts as described below. These efforts could translate into meaningful information about your genetics. [emphasis added]
The ethics of whole genome research in both the private and public sectors are explored in a consensus statement published in PLoS Biology. The following considerations are mentioned and recommendations for the first four are given.
- Duty to recontact study participant
- Right to withdraw from research
- Return of research results
- Public data release
- Benefit sharing
- Genetic discrimination
I must admit that discussion of ethics generally baffles me because I get so caught up on both sides (or maybe there are more than two sides?!). So I direct you to the Predictive Health Ethics Research (PredictER) Blog for further discussions of thorny issues surrounding genetics. PredictER is based at the Indiana University Center for Bioethics.
by Dr. Hsien-Hsien Lei
Posted March 20, 2008 in DNA and the Law
Sara Gaines at Guardian’s Joe Public blog has outed me as a bully in a discussion about children’s DNA in the UK national database. There’s also more from Evan Maloney at the Splat! Blog who coins the word “DNAed” for someone whose DNA is being collected:
Personally Iâ€™m all for the idea of dobbing in five year olds to the cops before they break the law. What a change in class-room behaviour that would create for primary teachers. Next time Wally the class clown is cracking jokes instead of listening to teacher, the teacher can respond with a sharp, â€˜Listen Wally, if you donâ€™t shut it right now Iâ€™m going to take a sample of your DNA and send it to the cops!â€™
On that note, I wonder what sort of behaviour would qualify for DNA sampling of five-year olds? Would it have to be violent or could any disruptive kid qualify for sampling? Maybe kids who keep forgetting to bring their books to class can get DNAed just because theyâ€™re annoying.
One Splat! Blog commenter NanaMex ponders a sci-fi scenario:
Of all of the uses of science this one scares me the most. Imagine, if you will, DNA specific viruses aimed at wiping out persons of specific heritage. This thought first came to me when the murder happened on Norfolk island and the DNA of every person living on the island was collected. There you have a genetically unique group of people, and the island would be a perfect laboratory for such experimentation.
With a gene data base such as would be collected under this kind of program genetically specific viruses would be easier to fabricate. Imagine being able to commit genocide, wiping out specific races, without harming those around them.
This idea is very similar to the premise of The Odyssey Gene by Kfir Luzzato in which the population is segregated into those who have or donâ€™t have a specific variant of the “Davies Gene” that grants immunity to a fatal infectious disease.
And yet another Splat! Blog commenter, harlequin of sydney, penned a poem:
If you go into school today
Be prepared for a big surprise
Theyâ€™ll take a sample of your DNA
If they catch you telling lies
Or handing homework in too late,
not doing what youâ€™re told,
Asking little Nancy for a date,
Being forward and way too bold
So hereâ€™s my advice, handle it this way:
Take your homework in on time
Volunteer a bubble of your DNA
It makes a paper-glue sublime
Then when you hand your homework in
Watch the expression on teacherâ€™s face
When they realise why you didnâ€™t need a pin
And why your work is all white space
By the way, it is highly likely that we’ll have international DNA databases in the future. The U.S. and Germany are already talking about sharing fingerprint and DNA data with each other.
What do you think of collecting DNA from children? Take the poll in the right sidebar.
by Dr. Hsien-Hsien Lei
Posted March 17, 2008 in DNA and the Law, Polls About DNA
If it were up to Gary Pugh, director of forensic sciences at Scotland Yard and the new DNA spokesman* for the Association of Chief Police Officers (Acpo), my DNA would have been put in a national database from the time I started school. Yes, I admit I was a little bully and perhaps that would have identified me as a future offender although I don’t think I’m quite bad enough to lock up. Yet….
Pugh claims that criminology studies show children as young as five will behave in ways which predict their potential to commit crime in the future. These “problem children” should have their DNA collected for crime prevention.
If we have a primary means of identifying people before they offend, then in the long-term the benefits of targeting younger people are extremely large. You could argue the younger the better. Criminologists say some people will grow out of crime; others won’t. We have to find who are possibly going to be the biggest threat to society.
By committing children’s DNA to the national database, Pugh asserts that society will save money and suffer less crime. It’s estimated that in the UK, 1.5 million samples of DNA from 10 to 18-year-olds will be in the national DNA database by March 2009. Similar collection procedures apply to juveniles as well as to adults who can be asked to give a DNA sample upon arrest even if they are not charged or convicted.
A recent report from the think-tank Institute for Public Policy Research (IPPR) called for children to be targeted between the ages of five and 12 with cognitive behavioural therapy, parenting programmes and intensive support. Prevention should start young, it said, because prolific offenders typically began offending between the ages of 10 and 13.
As a parent, I have observed that certain children do seem to exhibit more “problem” behavior than others but it is very difficult to tell whether that is due to evil temperament that won’t change or if it’s the result of family environment or who knows what other mysterious factors that mold our behavior. No criminology assessment can be 100% predictive and there is no way I would allow my child’s DNA to be systematically collected for a DNA database unless every single citizen is mandated by law to give theirs too.
Pugh suggests that we stop thinking of DNA so emotionally.
Fingerprints, somehow, are far less contentious. We have children giving their fingerprints when they are borrowing books from a library.
I did not know libraries fingerprint their users but guess what? I think it’s nuts too!
Putting aside that no sane adult would want their DNA in a national database without good reason, what about our children? What kind of world are we living in when innocent children are viewed not in terms of their positive potential but in terms of their criminal potential?!
What do you think about collecting DNA from innocent children? Take the poll after the break.
*DNA spokesman? Sounds like a newly created job title. If you’re looking for a DNA spokesperson, email me! I’m available.
by Dr. Hsien-Hsien Lei
Posted February 24, 2008 in DNA Testing, DNA and the Law
Genetic information should by rights be our own to share when we think it’s appropriate. The reality, however, is not so straightforward. In today’s New York Times article, Fear of Insurance Trouble Leads Many to Shun or Hide DNA Tests, Amy Harmon writes of people who have a very real fear of having to pay jacked up insurance premiums or being denied insurance altogether. The problem may be especially bad in the US where health insurance is not a citizen’s right.
The culture of secrecy around genetic information is stronger in the United States, some experts say, than in countries where people are guaranteed health care.
In the UK (where I currently live), medical genetic testing is available through the National Health Service (NHS). While there does not appear to be any issues regarding insurance coverage should a person test positive for a disease-causing mutation, greater issues are availability and timeliness of testing and results. Also, many UK citizens have private insurance through their employers in addition to their free NHS insurance.
Two years ago, Cancerbackup found in a survey of regional genetics centers that waiting time for appointments to receive a BRCA genetic test can be as long as nine months with a further wait of 1 to 2 years for results. In some ways, this could be construed as discrimination in that other forms of testing are probably taken more seriously and performed more speedily.
In the agreement, amongst other things, insurers give ten commitments on the information that they will ask of customers. For example, customers will not be asked to:
- have a predictive genetic test in order to obtain insurance
- tell them about a family member’s test results
- tell them about any predictive or diagnostic genetic test results acquired as part of clinical research
- tell them about any predictive test results that are made available after their policy has started, for as long as that policy is in force.
There are caveats to the Moratorium including one in which insurers can ask about Genetics and Insurance Committee approved predictive tests for policies over Â£500,000 of life insurance, or Â£300,000 of critical illness insurance.
Last June, BMJ debated the use of genetic information to determine insurance eligibility. I, along with other readers, sided with those who believe that insurance companies do not have an automatic right to our DNA data while HG Stern at InsureBlog disagreed .
…to the extent that such information is helpful to an underwriter, it’s in the realm of pricing (or whether or not to offer coverage at all). It’s really no different than knowing whether or not the applicant is a smoker, or a diabetic, or recently had knee surgery. All of this goes into the mix, and genetic information may (or may not) play some role.
Of course, the results of genetic testing may be moot if you have a strong family history of a certain disease. If so, a negative genetic test could work in your favor.
For other comments on the NY Times story:
- Schelly Talalay Dardashti – New York Times: Genetics and insurance
- John Hawks – DNA testing and health insurance
- Misha Angrist – Dear GINA…you never call, you never write
- Kevin Drum – DNA and the Insurance Industry
- Harold Pollack – Genetic discrimination: Misplaced worries, but right argument for health reform
- Doug Masson – Rewarding Ignorance
- Steven Murphy – Unfounded NYT article
Photo credit: “The life insurance office,” Wellcome Collection under Creative Commons
by Dr. Hsien-Hsien Lei
Posted January 23, 2008 in DNA Products, DNA and the Law
Earlier this month, I had some fun with a sign that I saw on Queensway in London, UK. It claimed that the neighborhood was safer because they were marking property with DNA. Perhaps they were referring to the SigNature Program from Applied DNA Sciences.
Applied DNA Sciences uses DNA markers from botanical sources. They rearrange the markers into unique encrypted sequences then embed the DNA onto consumer products that need to be protected, including drug tablets and capsules, banknote threads, holograms, artwork, and collectibles. The company claims that the markers embedded in indelible SigNature DNA ink is safe to consume.
There are varying levels of product verification:
A SigNature DNA Encryption Pen can be used to detect the presence of their proprietary overt ink.
An instant reader can be used to detect DNA.
Portable PCR machines can produce “absolute authentication” in less than 30 minutes.
Forensic-level, authenticated PCR.
PCR DNA amplification is performed using specific primers that can only be synthesized if the unique encrypted DNA sequence is known.
Applied DNA Sciences states that false positives occur in less than 1 in 1 trillion cases and can authenticate at levels acceptable for forensic use. The SigNature Program is effective against counterfeiting, product diversion, piracy, fraud and identity theft.
NB: More about DNA marking of property in the UK at UK Crime Prevention.
by Dr. Hsien-Hsien Lei
Posted January 9, 2008 in DNA Testing, DNA and the Law
What is fair in love and war? When it comes to crime, does anything go as long as the perpetrator is caught? DNAWitness, a DNA test for race based on technology from DNAPrint Genomics, which also sells AncestryByDNA*, is considered by some law enforcement officials to be unfair and akin to racial profiling.
Unlike AncestryByDNA, which is used by genetic genealogists looking to learn more about the percent distribution of their racial ancestry, DNAWitness is used by law enforcement to narrow the pool of suspects or victims of crime. DNAWitness can determine which of four main continental groups an individual may belong to: European, East Asian, Native American, and Sub-Sahara African. And according to Wired, DNAWitness has been used in approximately 200 criminal investigations. While it has been useful, its reach has been limited because of the cost ($1,000) and controversy surrounding race and crime.
Troy Duster, former president of the American Sociological Association:
Once we start talking about predicting racial background from genetics, it’s not much of a leap to talking about how people perform based on their DNA â€” why they committed that rape or stole that car or scored higher on that IQ test.
From the comments in response to the Wired article, it’s clear that race (as always) is a hot button subject especially as it relates to DNA.
Excuse me, but how the heck is this “racial profiling”? This is a certain statement that the person who left DNA at a crime scene was of a particular ethnic background. That’s looking at facts. Racial profiling is making an unfounded, unsupported assumption about how someone will act (or has acted) based on race. Big difference there.
On the other hand, maybe this would be a good argument to get rid of security cameras. “Well, they’ve caught a black guy in the process of committing a crime. Clearly this is a racial issue, and we should stop using them.”
And sueno said,
Of course this technology is great to catch killers but will its long term effects be worth the ethical problems it raises and the abuse of raw data. The problem with this technology is there will be people who think they aren’t racist who will see the data of crime statistics and if they show one race being disproportionately criminal they will assume genetics/race is the reason while ignoring environmental factors and income levels, etc. Another problem is the government collecting DNA samples. It starts with criminals and then will branch out into all children in public school and then if you want to get a drivers license. If you don’t see the slippery slope there I suggest you read or watch some sci-fi (Brave New World).
Would you support the use of DNA testing to identify the race of a crime suspect?
*NB: The company I work for, DNA Direct, is a partner of DNAPrint.
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