Health Minister Wants Full-Genome Sequencing Of Every Newborn Child In UK To Become Routine

from the knowing-too-much dept

The cost of sequencing every DNA "letter" in a human genome has fallen faster than Moore's Law, from around $100 million in 2001, to under $1,000 today (although some say the overall cost in a clinical context is higher). This brings with it the prospect of routinely carrying out full-genome sequencing for everyone. That's precisely what Matt Hancock, the UK's Health Secretary, has said he wants to see as a part of the country's National Health Service (NHS), reported here by The Telegraph:

"My ambition is that eventually every child will be able to receive whole genome sequencing along with the heel prick test [a basic test for genetic conditions]," he told the conference.

"We will give every child the best possible start in life by ensuring they get the best possible medical care as soon as they enter the world. Predictive, preventative, personalised healthcare -- that is the future of the NHS -- and whole genome sequencing and genomics is going to play a huge part in that," he said.

Creating a massive database of near-complete genomes will probably ring alarm bells for Techdirt readers. Just recently, US police have started obtaining warrants to search entire DNA databases, even of people who opted out of allowing law enforcement to access their genomic data. That's despite the fact that "touch DNA" is mostly guesswork, and that crime lab testing is beset with problems. Moreover, a mistaken belief that DNA is infallible can lead to innocent people being charged with serious crimes like murder.

It's true that DNA can be a very powerful tool for solving crimes by finding distant matches in publicly-available genetic data, and then constructing family trees to narrow down the possible suspects. But that fact also exposes why routinely obtaining someone's DNA, as Hancock proposes for newborns in the UK, has an important impact on anyone related to the person whose whole genome is sequenced.

Even when DNA databases of a complete population are not set up for the purposes of mass surveillance, as Kuwait proposed (but then scaled back), and as China is implementing in Xinjiang as a way of controlling the local Uyghur population, there are other serious issues that need to be considered.

For example, the Telegraph article notes that full-genome sequencing of newborns means "parents could choose to be alerted to the fact their child faced heightened risks of specific diseases, and allow the NHS to offer more tailored treatment." But would parents necessarily welcome knowing that their child is more likely than the average individual to develop some serious genetic condition at some point in their lives? And what about if that condition had no treatment at present? What is gained by knowing of the risk? Might parents, and later the affected children themselves, find that knowledge almost too much to bear -- a genetic sword of Damocles hanging over them all their lives? Equally, parents might feel guilty if they don't ask for this information, which could allow for earlier treatment of diseases.

There's no doubt that full-genome sequencing will have a major impact on medicine in the decades to come, and offers the hope of more targeted and more effective medicines for many conditions. But for the benefits to be realized, doctors and genetic counselors will need to find effective ways to talk to people about what the detailed but probabilistic information revealed by their complete genomes will mean for their future health and treatments. Only then can we make informed decisions that enhance our well-being and happiness.

Follow me @glynmoody on Twitter, Diaspora, or Mastodon.

Filed Under: babies, dna, health minister, matt hancock, nhs, privacy, surveillance, uk, uk health secretary

DailyDirt: Dealing With Zero (Or Negative) Population Growth

from the urls-we-dig-up dept

Pessimistic economists have predicted overpopulation problems based on exponential growth trends, but statistics point to lower birth rates as countries become more industrialized. So now, there's a different kind of problem -- aging populations and minimal population growth in certain countries. How will we deal with people living longer and having fewer and fewer kids?

• China has officially ended its "one child" policy, allowing its citizens to have up to two kids. An estimated 400 million babies "avoided conception" since 1979, but now that the Chinese population is skewing older, more 25-64yo workers will be needed. However, the social norm of having only one child might be more difficult to reverse than simply lifting a ban. [url]
• The Government of Singapore has been trying to encourage its citizens to have more kids for many years, partnering with ad agencies to create some goofy campaigns. A few years ago, on "National Night" (Aug 9th), Singaporeans were called upon to perform their civic duty... and make some babies. (The government has also tried tax incentives, paid maternity leave, and programs to help singles develop long-term relationships.) [url]
• Denmark also has an aging population problem -- and a goofy ad campaign to "do it for mom" to get people to think about making grandkids. The country is even throwing in a vacation package discount because statistics show that couples tend to have kids after romantic, exotic getaways. [url]

After you've finished checking out those links, take a look at our Daily Deals for cool gadgets and other awesome stuff.

Filed Under: ad campaigns, babies, birth rates, china, demographics, denmark, national night, one child policy, parenting, singapore, zero population growth, zpg

DailyDirt: Correlations For Being Smart

from the urls-we-dig-up dept

If there were some simple things you could do that would make you smarter, you'd do them, right? Unfortunately, it's difficult to guarantee that a particular activity will actually cause you to be smarter. If you'll settle for a nice correlation, though, there are plenty of things to try! Here are just a few.

• People who stay up late and wake up late (aka night owls) seem to be smarter than people who go to sleep early and wake up early. People who are skeptical of this statement are even smarter. [url]
• A study published in JAMA Pediatrics reports that breast-fed babies have measurably higher IQ scores by age 7. Just wait for the manufacturers of infant formula to sponsor another study.... [url]
• College kids who want a slightly higher GPA should join a gym. When hearing this, the smart students ask, "Does just paying for a membership count?" [url]

If you'd like to read more awesome and interesting stuff, check out this unrelated (but not entirely random!) Techdirt post via StumbleUpon.

Filed Under: babies, causation, correlation, gym membership, intelligence, iq, night owls, parenting, smarter

DailyDirt: Children Are The Future, Engineer Them Well, & Let Them Lead The Way

from the urls-we-dig-up dept

The movie GATTACA came out back in 1997, but the technology to breed better people is just now starting to become more practical. We've been able (through in vitro fertilization) to select a desired baby gender for years, so selecting other traits doesn't seem that far off -- even though gene expression is a pretty complicated process. Here are just a few more projects that could lead to designing our kids' genes with more fine tuning.

• Zhao Bowen heads up a genetic research project at BGI Shenzhen that aims to crack the genetic code for intelligence by sequencing the genes of thousands of intelligent people around the world. The project boldly claims that it could boost the IQ of unborn children by 20 points. [url]
• Genetic research is finding possible links between genetic markers and some forms of autism, suggesting that there could be genetic therapies in the future. Mapping genetic mutations to particular brain traits isn't a simple task, but with more data, brain research has the potential to make significant changes to society. [url]
• Professor Julian Savulescu argues that screening babies for genetic defects is simply responsible parenting. The debate over designer babies is far from over.... [url]

If you'd like to read more awesome and interesting stuff, check out this unrelated (but not entirely random!) Techdirt post via StumbleUpon.

Filed Under: autism, babies, children, designer babies, dna sequencing, eugenics, gattaca, gene therapy, genetic engineering, intelligence, iq, julian savulescu, parenting, zhao bowen
Companies: bgi shenzhen

DailyDirt: Big Data On Kid Development

from the urls-we-dig-up dept

Long term studies of children are expensive, but the data collected may be invaluable -- especially if wide-ranging policies are based on them. The amount of data Facebook is collecting on kids may be massive, but it'll probably only be data mined for marketing purposes. Here are just a few examples of some kid research that could influence the way people raise their kids.

• Measuring the difference between heart rates when a baby inhales and exhales could lead to predictive indicators for whether or not that kid will overcome poverty. For "sensitive" babies, where the difference is large, a stable environment may have a greater effect on the child's future well-being. [url]
• Preschool seems to be important for disadvantaged kids, but the benefits for middle class kids are not as clear. So flip a coin, tiger-moms, but some economists might have a good argument for government funded access to preschool for at-risk toddlers. [url]
• The 7 Up documentary began in 1964 and followed seven year old kids from different economic backgrounds as they grew up. The latest installment, 56 Up checks in on these people now as they face retirement (or not) -- and presents a fascinating snapshot of society. [url]

If you'd like to read more awesome and interesting stuff, check out this unrelated (but not entirely random!) Techdirt post.

Filed Under: 7 up, babies, data, development, kids, prediction, preschool

DailyDirt: People Colored

from the urls-we-dig-up dept

There used to be Crayola crayons labeled "flesh" -- which was re-named to "peach" in 1962, and now Crayola has a pack of eight crayons specifically called "multicultural" that includes: black, sepia, peach, apricot, white, tan, mahogany and burnt sienna. However, there are other colors that have been used to label people, like red and blue. The history of these color associations isn't so black and white. Here are just a few interesting links on how we've changed looking at colors over the years.

• Red states and blue states didn't always refer to Republican and Democratic electorates, respectively. Red and blue were frequently used to describe American political affiliations, but which color represented which party was not consistent until relatively recently (ca. 2000) -- for instance, during the Cold War, who wanted to be described as "red" in American politics? [url]
• Studies of how linguistic descriptions of color affect the way people perceive colors have rekindled the idea that language can shape how people think. And that's doubleplusgood. [url]
• Babies used to be dressed up in all white, but then little boys started only wearing blue... and girls would wear only pink. Again, this convention wasn't settled on for a long time, and it could have easily gone the opposite way (boys in pink, girls in blue). The real loss is in gender neutral colors for children's clothing.... [url]

If you'd like to read more awesome and interesting stuff, check out this unrelated (but not entirely random!) Techdirt post.

Filed Under: babies, blue, color, crayons, democrat, perception, red, republican
Companies: crayola

Oxford Professor Says Mankind Is Ethically Obligated To Create Genetically Engineered Babies

from the pick-and-choose dept

As we were just talking about the appeals court ruling that isolated genes are still patentable, we will have to begin thinking about how such a ruling will impact our lives. Some groups have decided to go the property rights route to assign ownership of DNA. Others wring their hands over how this will impact medicine. But, now that testing for genetic markers in embryos is in vogue, we can finally ask "what about the children?"

The Telegraph put that question to Professor Julian Savulescu, expert in practical ethics at Oxford, and he states, unequivocally, that not only should the genetic testing of embryos for physical illnesses be allowed, but applying those same tests for behavioral genetic markers is mankind's ethical obligation. It should be noted that, currently, outside of a few accepted tests these screenings are illegal, but Savulescu thinks that needs to change.

"Surely trying to ensure that your children have the best, or a good enough, opportunity for a great life is responsible parenting?" wrote Prof Savulescu, the Uehiro Professor in practical ethics. "So where genetic selection aims to bring out a trait that clearly benefits an individual and society, we should allow parents the choice."

There is a word for this kind of mass-screening, one which you won't hear Savulescu utter, and it is called eugenics. The reason many advocates of this kind of screening won't use that word is because it long ago became associated with Nazi philosophy, even though (as you can read in the Wiki article) many other nations did and still do some flavor of eugenics. The United States, for example, has some jurisdictions where testing for diseases (mostly STDs) that could be passed along to children is a requirement prior to attaining a marriage license. Israel has a program called Dor Yeshorim that tests for a multitude of hereditary diseases like Tay-Sachs and Cystic fibrosis. In China, eugenics has taken a more prominent role, with the PRC's Marriage Law requiring a doctor's approval prior to marriage (harsher language against specific illnesses found in previous iterations of the law have been removed over the years).

But what is different about Savulescu's argument is that we are no longer talking about genetic illnesses in the traditional sense, but instead behavioral genetic markers.

"Indeed, when it comes to screening out personality flaws, such as potential alcoholism, psychopathy and disposition to violence, you could argue that people have a moral obligation to select ethically better children. They are, after all, less likely to harm themselves and others."

This seems to me to be a gross-oversimplification of the role genetics plays in behavior. While we can all spend the next few weeks in a long-form discussion of whether nature or nurture plays the predominant role in behavioral outcomes of children, I think few would disagree that both are aspects that do in fact play some role. And, while Savulescu seems to make his argument matter-of-factly, other bioethicists disagree. Predictably, many of these criticisms focus on Nazi eugenics to extrapolate the entire field, but not all of them.

Biologists, for instance, point to what occurs in small, isolated populations (i.e. the Dodo bird) when a lack of genetic diversity leads directly to a species extinction. They then point out that the combination of allowing for "designer babies" based on widely accepted culturally preferred traits and the perhaps inevitable monoculture that would result would breed a scenario in which mankind was ripe for massive exposure to a single disease.

Add to all of this the potential for inherent socio-economic lines to be drawn in the sand in terms of health, between those that can afford the testing for what are now patentable isolated genes and those that cannot, and you can see where potential abuse and negative consequences loom around every corner.

That said, I refuse to take a luddite approach to genetic testing in general, or even eugenics as a whole. I admit that I write this entire piece without fully understanding where I stand on the issue, aside from what I think is the rather common sense position of advocating caution. Instead, I open the topic to you, the reader, for the comments section.

Filed Under: babies, ethics, gattaca, genetic engineering, traits

DailyDirt: Cool-Looking Photography

from the urls-we-dig-up dept

Digital photography has created a massive amount of incredible images. Although professional photography has and always will require quite a bit of skill, the rise of amateur photographers is unmistakable. We've pointed out some cool photography before, and here are just a few more examples.

• Family portraits aren't usually made from collages, but when family members are spread out all over the globe, combining Skype video stills will have to suffice. Rear projectors would be a bit better for this.... [url]
• People riding bikes without bikes are just floating above the street. It's just so easy to photoshop things out of a picture nowadays. [url]
• New moms often enjoy taking a lot of photos of their babies, but some moms also like to see their kid fly. Maybe in a few years, these "floating people" pictures will look like a dated image filter. [url]
• Let sleeping babies sleep.. and then take pictures of them in creative ways. Try this at home. [url]
• What can you do with a leaf blower and some good indoor lighting? Take some cool pictures or insert joke here. [url]

If you have some more free time, check out this unrelated, non-random Techdirt post.

Filed Under: babies, collage, lighting, photography, photoshop, photoshopping, portraiture

DailyDirt: Understanding Kids

from the urls-we-dig-up dept

Young kids can be really fun to play around with, but sometimes they can be little terrors, too. By understanding how little kids think and behave, parents might be able to cope better with the "terrible two's" (which can extend into the "terrible three's and four's"). Here are just a few interesting links on studying our descendants.

• There's a nascent science studying the phenomenon of children's temper tantrums. All tantrums could have a predictable pattern that might lead to better ways of coping with them and maybe avoiding them someday. [url]
• Plenty of parents try to tell their kids to "use words" to describe what they want. Are kids hard-wired for grammar to use their words, though? [url]
• While human babies weigh about 6% of the weight of their moms, newborn apes generally weigh about 3% of their mother's weight. Having big babies may have influenced the development of human society, encouraging our ancestors to become more social creatures to care for our kids. [url]
• To discover more interesting articles on the human mind, check out what's currently floating around the StumbleUpon universe. [url]  

By the way, StumbleUpon can recommend some good Techdirt articles, too.

Filed Under: babies, child development, grammar, kids, language, temper tantrums