Polls About DNA

Collecting DNA from Innocent Children to Prevent Crime

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….

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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.

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(8 comments)


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“One Package Fits All” DNA Testing

by Dr. Hsien-Hsien Lei
Posted January 4, 2008 in DNA Testing, Polls About DNA

peekabooMixing genealogy/ancestry genetic testing with medical genetic testing has always seemed tricky to me. My feeling is that most people who are interested in learning more about their family tree tend to be wary of using their DNA to understand their medical history. The target market for the two sides of consumer genetic testing may overlap, but not completely. So, difficulty arises when unexpected results surface from what were supposed to be purely genealogy-based DNA tests.

Last summer, the DYS464 Y-DNA marker was found to be associated with spermatogenic failure and consequently, male infertility. The frequency of the specific AZFc deletion in the DYS464 marker could be as rare as 1 in every 8000 markers and as common as 1 in 1000. According to The Genetic Genealogist, at least six genealogy DNA testing companies offer testing for the DYS464 marker. Customers who have this specific deletion may be shocked to find that they are not the biological father of their children and those who have not become fathers yet, may find that they will never have biological children of their own. How many genetic testing companies disclose the possibility of this unexpected finding from genealogy DNA testing? How many customers even have a clue that they might be in for more than just a link to some distant relative by participating in genealogy DNA testing?

Customers of next-gen personal genomics companies should be aware that they are not only signing up for genealogy DNA testing, but also genetic testing that will give them information on disease risk and propensity for certain physical and physiological characteristics. These next-gen genetic tests are being offered as one package that cannot be bought in parts although deCODEme allows customers to disable disease risk analysis for their account. (Disabling the disease risk analysis doesn’t mean you get a discount on their $985 service, however.)

This week, US News & World Report highlights GeneTree, 23andMe, deCODEme, AfricanDNA, and the Personal Genome Project. The article makes no distinction between genetic testing for genealogy purposes vs medical purposes and misleads the reader into thinking that the focus is on genetic genealogy with the title – A High-Tech Family Tree: New services use DNA to connect relatives and track down ancestors. But it’s hard to blame the reporter for getting confused when companies like 23andMe and deCODEme offer both genealogy DNA testing and what is essentially medical genetic testing (calculating risk of diseases and correlations between genetic markers and disease/physical and physiological characteristics) and yet maintain the stance that the data and analyses customers receive are not to be used for making health care decisions.

The information provided by deCODEme should be used within this informational context, realizing that there are many other factors besides genetics that contribute to disease development of the complex diseases included in deCODEme’s information services. The goal of deCODEme is to empower you by helping you to get to know your genome. If the information provided raises questions or concerns about your health, we recommend you see your doctor and discuss other options of testing or implementation of approved preventive measures.

It’s starting to seem that the many uses of DNA are getting muddled up in people’s minds. Is it possible or desirable to keep different types of results segregated? For example, a customer may not be ready to know if he’s at increased risk of such and such disease, but he might be willing to dip his toes in the water for some fun stuff like seeing if he shares genetic markers with some political despot. Keeping the various types of genetic testing separate is possible but difficult. After all, all genetic testing examines the only set of DNA each of us has and the same stretch of DNA can tell more than one story.

The genetic testing market is still in its infancy. As it develops, it is sure to split off into services catering to each type of customer and the various information levels that are desired. deCODEme is on the right track by allowing their customers to turn off the disease risk prediction function but it would be even better when we’re able to create customized genetic testing packages to suit our individual needs. We may be as unique as our DNA but right now, genetic testing is still one package fits all.

What type of DNA test are you interested in? Take the poll below the fold.

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(5 comments)


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New Line Genetics and SellMyDNA.com Offer $5,000 for Your DNA

by Dr. Hsien-Hsien Lei
Posted October 29, 2007 in DNA Testing, DNA in General, Gene Therapy, Polls About DNA

cold spring harbor dnaOver the past few weeks, I’ve been communicating with Anthony Martin, the founder and owner of New Line Genetics, a Silicon Valley company positioned at the forefront of the genomics revolution. He’s got some interesting and innovative ideas that will definitely get people talking. I’ve invited him to introduce his company today. (Disclaimer: I have no financial interest in New Line Genetics.)

Hsien has graciously offered me the space for a guest post today, and I am honored to accept. I would like to use this platform to announce the official launch of SellMyDNA.com! This site will allow any individual to sell his or her DNA to New Line Genetics for research and development purposes, and each DNA donor will be paid at least $5,000 USD for their sample.

Since I launched the company back in 2002, we’ve invested hundreds of millions of dollars into genetics research, and we’ve grown at a 50% rate in both profits and staff size every year. With the enormous revenue growth we expect from our proprietary organ-farming system, we are poised to become the largest and most influential genetics company in the world within the next five years. During this time we plan to vastly improve the current state of medical genetics, and use our developing cybernetics technology to lay the groundwork for the next stage of human evolution.

In order to continue at our current pace of research and development, we need your help. Our existing cell lines are no longer sufficient for the volume of work we’re doing, so we’ve been looking into ways to obtain viable samples in a cost-effective and legal way. To this end, New Line Genetics is leading a pilot program with the patent office that allows us to patent individual genomes. This new process circumvents all current restrictions on sequence patents, since we are patenting a totally unique sequence, not a generic one. As long as the individual donor is aware that his genomic sequence will no longer belong to him, and said donor receives appropriate payment for goods sold, we are free to use the DNA sample in any of our existing programs.

This is good news for both us and you. We will be able to continue our groundbreaking research, and you’ll be able to earn at least $5,000 USD by selling something you don’t even use! As an added bonus to you, if your specific DNA sample is used to generate a replacement organ that we grow in our lab and sell to a hospital, you will be eligible to receive a percentage of the profit. So please, tell your friends and family about SellMyDNA.com, and keep those samples coming in!

Would you sell your DNA? Take the poll below the fold!

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(33 comments)


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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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(11 comments)


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Eye on DNA Headlines for 28 August 2007 and a Poll on DNA Storage

by Dr. Hsien-Hsien Lei
Posted August 28, 2007 in Eye on DNA Headlines, Polls About DNA

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(>> Start a discussion!)


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Police Want to Collect Abandoned DNA from Everyone

by Dr. Hsien-Hsien Lei
Posted August 2, 2007 in DNA and the Law, Polls About DNA

british policeThis morning I spent a couple of hours at my local West London high road shopping and hanging out at the park with my kindergartener. Little did I know that the police could have been following my every move, collecting my fingerprints, DNA, footwear impressions, photographs, and other samples that I might have left behind on discarded drink bottles or candy wrappers. I say “could have been” because the scenario is unlikely. For now.

The UK Home Office is planning to give police the power to collect DNA samples off anything on the street without first arresting and bringing the suspect in to a police station. That means they can collect your DNA without your knowledge from any bodily samples you leave behind in public. Police in the US have been secretly collecting “abandoned” DNA from suspects for some time to convict criminals who might have never been caught otherwise.

Professor Elizabeth Joh of the University of California Law School says that police treat abandoned DNA the same as they would trash, which is searchable without a warrant. It’s your fault if you leave your DNA in a public place.

If we look at this kind of evidence as abandoned, then it really permits the police to collect DNA from anyone — not just cold case issues — from anyone at any time and really for no good reason or any reason at all.

In addition to collecting abandoned DNA, police will also be allowed to take DNA samples from people for violating minor laws, such as littering, speeding, or not using seatbelts. Yes, they’re waving that buccal brush at YOU!

The UK national DNA database is already the largest in the world with over 5% of the population registered. If these new regulations are approved, the volume of DNA samples will swell. The US is already experiencing a shortage of trained lab technicians to process a far fewer number of DNA samples. Is the UK prepared?

Do you think the police should be allowed to take DNA samples anywhere they want? Take the poll!

{democracy:6}

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(20 comments)


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Esther Dyson, Genome Enthusiast

by Dr. Hsien-Hsien Lei
Posted July 25, 2007 in DNA in General, Personalities with DNA, Polls About DNA

cheerleader 2Add Esther Dyson to the list of genome enthusiasts, which includes her father Freeman Dyson, James Watson, Craig Venter, and me! (OK, so I am not of the same league as the others on the list but a girl can dream, can’t she?)

In today’s Wall Street Journal, Ms. Dyson writes about her decision to reveal all–her genome, her health, and her medical records–as part of George Church’s Personal Genome Project (PGP). She gives the following reasons for her “full disclosure”:

  1. She wants to show that her genome doesn’t hold any special information that others can use to hurt her.
  2. She doesn’t believe she has any deep secrets to hide or anything that would be detrimental to relatives who share parts of her DNA.
  3. She doesn’t work for anyone who would fire her for having genetic mutations.
  4. She has health insurance.
  5. She wants society to start thinking about what will happen when we know more about our genetic predisposition for certain medical conditions – taxes, subsidies, penalties,….
  6. She believes that information on our personal DNA will become an inevitable part of our lives. We must begin to address the possibilities now and take responsibility for the consequences.

Esther Dyson’s genome and other personal health info will be released to the public in a couple of months along with nine other people’s (does anyone know who they are?). As Ms. Dyson mentions in her piece, genes are not destiny. Because environment plays a strong, if not stronger, part in who and what we are, how much of that information was collected from the PGP participants? I wonder what factors–genetic or otherwise–might have contributed to the development of someone like Esther Dyson, a successful free-thinking, cutting-edge entrepreneur.

Enrollment in the Personal Genome Project will open again in September. If I had my genome sequenced, I’d like to compare it to Ms. Dyson’s and see what doesn’t match up. Which parts of my DNA kept me from achieving the same heights of success? ;)

Would you apply to have your genome sequenced by the PGP? Take the poll below:

{democracy:5}

NB: More discussion on the Personal Genome Project at Genome Technology Daily Scan.

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(18 comments)


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DNA Poll: Patenting Genes

by Dr. Hsien-Hsien Lei
Posted July 11, 2007 in DNA Podcasts and Videos, DNA and the Law, Polls About DNA

{democracy:4}

 

Yesterday, the Genetics & Public Policy Center at Johns Hopkins hosted GenePOPS — Who Owns Your Genes? Intellectual Property and the Human Genome. Panel members included:

  • Barbara Caulfield, executive vice president & general counsel for Affymetrix, Inc.
  • Robert Cook-Deegan, director, Center for Genome Ethics, Law & Policy, Institute for Genome Sciences & Policy, Duke University
  • Steve Haro, senior advisor & communications director, Office of U.S. Representative Xavier Becerra
  • F. Scott Kieff, associate professor of law at Washington University, St. Louis, and fellow at the Hoover Institute, Stanford University

Slides from Robert Cook-Deegan and F. Scott Kieff’s presentations are available and ScienceDaily has coverage of the event. I was not aware that in February 2007, the Genomic Research and Accessibility Act was introduced which would prohibit the patenting of human genetic material.

Notwithstanding any other provision of law, no patent may be obtained for a nucleotide sequence, or its functions or correlations, or the naturally occurring products it specifies.

crichton nextAlso in February, Michael Crichton’s latest novel, Next, was published and it got special mention at the GenePOPS seminar. In addition, Crichton published an opinion piece on gene patents: Who owns your genes?

Five main recommendations were given at the end of Next:

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(9 comments)


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Eye on DNA Links – June 16, 2007

by Dr. Hsien-Hsien Lei
Posted June 16, 2007 in Eye on DNA Headlines, Polls About DNA

{democracy:3}

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(1 comment)


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Do insurance companies have a right to our DNA?

by Dr. Hsien-Hsien Lei
Posted June 9, 2007 in DNA Testing, DNA and Disease, DNA and the Law, DNA in General, Polls About DNA

insurance salesman 1The US may soon be outlawing the use of genetic information to determine insurance eligibility but the debate still rages over at BMJ where biomedical ethics professor Richard Ashcroft supports the principles of the Genetic Information Nondiscrimination Act (GINA) while professor Søren Holm does not. The UK currently has a moratorium on the use of genetic information for insurance underwriting but insurance carriers want to change this starting next year.

The question: Should genetic information be disclosed to insurers?

Prof. Ashcroft says “no” on the basis of unfair discrimination via potential misinterpretations of genetic information. He also argues that it’s a social injustice to punish those who’ve had the “ill luck” to inherit genetic mutations predisposing them to disease. (Of course, all of us carry genetic mutations predisposing us to disease and eventually, this will cease to be an issue.) The argument is that individuals with the bad luck to have disease-causing mutations deserve insurance even more because that’s what insurance is for – covering accidents.

Prof. Holm says “yes” to allow insurance companies access to genetic information because genetic information is no different from other data, such as pre-existing medical conditions or family history. He says that it is unfair to ask insurance companies to operate without a complete medical history since they need to be cost effective. (Although plenty of people withhold critical information precisely because they fear their premiums will skyrocket or they will be denied insurance completely.)

I say “no” to making genetic information widely available to insurers because information on my genes is not just about me. My genetic profile can give information about family members as well, especially my parents, siblings, and children.

Knowing the gene variant you carry could make it possible to infer those carried by your relatives as well. This situation is particularly clear-cut for diseases that are caused by a single dominant gene with 100% penetrance (the presence of the disease gene always causes the disease). Huntington’s disease is one example. If a currently healthy person tests positive for the gene causing Huntington’s disease, it is easy to figure out that the gene was inherited from the parent with the positive family history. This parent’s positive status can then easily be inferred from the child’s positive result.

What’s worse, asking for genetic information for one purpose can cause problems in other ways. Family turmoil ensues if the parent had not wanted to know if s/he carried the disease gene, preferring instead to take life day-by-day never knowing if or when the disease might strike. And what about when testing can reveal secrets about family relationships that would have never been known before? Fathers, mothers and children, or sisters and brothers may turn out not be biologically related or perhaps related more closely than previously thought.

How would you answer the question? Take the poll below:

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(22 comments)


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