POLITICS & LAPTOPS

Politics 'stifling $100 laptop'

By Jonathan Fildes Science and technology reporter, BBC News

The government of Nigeria is still assessing the scheme Laptop in Nigeria

A lack of "big thinking" by politicians has stifled a scheme to distribute laptops to children in the developing world, a spokesman has said.

Walter Bender of One Laptop per Child (OLPC) said politicians were unwilling to commit because "change equals risk".

But, he said, there needed to be a "dramatic change" because education in many countries was "failing" children.

In an interview with the BBC, Nigeria's education minister questioned the need for laptops in poorly equipped schools.

Dr Igwe Aja-Nwachuku said: "What is the essence of introducing One Laptop per Child when they don't have seats to sit down and learn; when they don't have uniforms to go to school in, where they don't have facilities?"

"We are more interested in laying a very solid foundation for quality education which will be efficient, effective, accessible and affordable."

The previous government of Nigeria had committed to buying one million laptops.

Dr Aja-Nwachuku said he was now assessing OLPC alongside other schemes from Microsoft and Intel.

There is still a concerted misinformation campaign out there Walter Bender, OLPC

"We are asking whether this is the most critical thing to drive education."

But speaking separately to BBC News, Professor Bender said: "We think that change has to be dramatic."

"You've got to be big, you've got to be bold. And what has happened is that there has been an effort to say 'don't take any risks - just do something small, something incremental'."

"It feels safe but by definition what you are ensuring is that nothing happens."

Winds of change

OLPC was started in 2002 by Nicholas Negroponte, a professor at the Massachusetts Institute of Technology.

The laptops have been designed to cope with harsh conditions

It aims to put thousands of low-cost laptops, known as the XO, in the hands of children around the world.

The machines are planned to cost $100 and have been especially designed for use in remote and harsh environments where there is little access to electricity or the internet.

But getting the project off the ground has proved difficult.

Professor Negroponte has had high profile run-ins with major technology firms.

He told an audience at a Linux event: "if I am annoying Microsoft and Intel then I figure I am doing something right."

Microsoft head Bill Gates had questioned the XOs design, particularly the lack of hard drive and its "tiny screen".

But recently, the firm announced that it was working on a version of Windows XP that would run on the pared down machines.

The price will come down as the numbers go up. It will take time but it will happen Walter Bender

"We are spending a non-trivial amount of money," Microsoft's Will Poole told Reuters.

Earlier this year, Professor Negroponte also accused Intel of selling its own cut-price laptop - the Classmate - below cost price to drive him out of markets. He said that Intel "should be ashamed of itself" and said its tactics had hurt his mission "enormously".

Within weeks it was announced that Intel had joined the board of OLPC amid speculation that the firm was unhappy about the XO using a processor from its main rival AMD.

'Small thinking'

Although these episodes now appear to be behind OLPC, Professor Bender said there was still an "aggressive" effort to undermine the charity.

"There is still a concerted misinformation campaign out there," he said.

Mr Bender said he would not speculate on who was behind the alleged campaign.

"Wherever it is coming from, it exists," he told BBC News.

But he said the main problem for OLPC was dealing with conservative politicians.

"Change equals risk especially for politicians. And we are certainly advocating change because the [education] system is failing these children," he said.

"It has not been that processor versus that processor or that operating system versus that operating system - it's been small thinking versus big thinking. That's really the issue," he said.

Sales target

Originally, the laptops were to be sold to governments in lots of one million for $100 apiece.

Over time, however, the project has dropped the minimum number of machines that can be ordered, leading some to speculate that governments were not buying into the scheme.

Factfile: XO laptop

The project also recently launched an initiative to allow citizens of North America to buy two machines at a time; one for themselves and one for a child in a developing country.

But Mr Bender said the shift was because of a better understanding of how to distribute smaller numbers cheaply and effectively, rather than a lack of orders.

"Part of it was our understanding of how the supply chain was going to work and having enough flexibility in the supply chain to make it work with a small number," he said.

"The big numbers were really about how you get this thing started not how you make it work in the long term.

"That was always going to be about supporting any good idea that comes along. And we've been able to get it started without the big top down numbers so we are off and running."

Developing tool

Since the scheme was first announced in 2002 there have been reports of several countries signing up to it.

Both Nigeria and Libya were reported to have ordered more than one million laptops.

Tests of the Xo are going on around the world

Other countries including Thailand and Pakistan had also placed orders, according to reports.

But recently, OLPC revealed it had just taken its first order for 100,000 of the machines, placed by the government of Uruguay.

"Uruguay is first then it will be Peru, Mexico, Ethiopia then we are going to be doing stuff in Haiti, Rwanda and Mongolia," said Mr Bender.

In addition, he said, OLPC had done a deal with Birmingham, Alabama, in the US, to provide the laptop for schools in the city.

"The numbers of countries where we have trials set up is also increasing," he said.

Tests were also going on in the Solomon Islands, Nepal and India, a country that had previously shunned the scheme.

The Indian Ministry of Education had previously dismissed the laptop as "pedagogically suspect", whilst the Education Secretary Sudeep Banerjee said the country needed "classrooms and teachers more urgently than fancy tools".

Tipping point

The first machines will cost almost double the $100 originally planned.

The high price has been blamed on the increasing cost of the raw materials for the components inside the XO. Each machine currently costs $188.

"The price will come down as the numbers go up. It will take time but it will happen," said Mr Bender.

The manufacturer of the laptop - Quanta - recently revealed it had started mass production of the machines, after a number of delays.

Previously, OLPC had said it needed three million orders to make production feasible.

Professor Negroponte said it was an important milestone that had been reached despite "all the naysayers".

"We're not turning back - we have passed the point of no return," said Mr Bender. "It is happening."

How the world's best performing schools systems come out on top. McKinsey & Co.

From The Economist print edition

Oct 18th 2007

What works in education: the lessons according to McKinsey - How to be top

THE British government, says Sir Michael Barber, once an adviser to the former prime minister, Tony Blair, has changed pretty much every aspect of education policy in England and Wales, often more than once. "The funding of schools, the governance of schools, curriculum standards, assessment and testing, the role of local government, the role of national government, the range and nature of national agencies, schools admissions"—you name it, it's been changed and sometimes changed back. The only thing that hasn't changed has been the outcome. According to the National Foundation for Education Research, there had been (until recently) no measurable improvement in the standards of literacy and numeracy in primary schools for 50 years.

England and Wales are not alone. Australia has almost tripled education spending per student since 1970. No improvement. American spending has almost doubled since 1980 and class sizes are the lowest ever. Again, nothing. No matter what you do, it seems, standards refuse to budge (see chart). To misquote Woody Allen, those who can't do, teach; those who can't teach, run the schools.

Why bother, you might wonder. Nothing seems to matter. Yet something must. There are big variations in educational standards between countries. These have been measured and re-measured by the OECD's Programme for International Student Assessment (PISA) which has established, first, that the best performing countries do much better than the worst and, second, that the same countries head such league tables again and again: Canada, Finland, Japan, Singapore, South Korea.

Those findings raise what ought to be a fruitful question: what do the successful lot have in common? Yet the answer to that has proved surprisingly elusive. Not more money. Singapore spends less per student than most. Nor more study time. Finnish students begin school later, and study fewer hours, than in other rich countries.

Now, an organisation from outside the teaching fold—McKinsey, a consultancy that advises companies and governments—has boldly gone where educationalists have mostly never gone: into policy recommendations based on the PISA findings. Schools, it says you need to do three things: get the best teachers; get the best out of teachers; and step in when pupils start to lag behind. That may not sound exactly "first-of-its- kind" (which is how Andreas Schleicher, the OECD's head of education research, describes McKinsey's approach): schools surely do all this already? Actually, they don't. If these ideas were really taken seriously, they would change education radically.

Begin with hiring the best. There is no question that, as one South Korean official put it, "the quality of an education system cannot exceed the quality of its teachers." Studies in Tennessee and Dallas have shown that, if you take pupils of average ability and give them to teachers deemed in the top fifth of the profession, they end up in the top 10% of student performers; if you give them to teachers from the bottom fifth, they end up at the bottom.

The quality of teachers affects student performance more than anything else. Yet most school systems do not go all out to get the best. The New Commission on the Skills of the American Workforce, a non-profit organisation, says America typically recruits teachers from the bottom third of college graduates. Washington, DC recently hired as chancellor for its public schools an alumna of an organisation called Teach for America, which seeks out top graduates and hires them to teach for two years. Both her appointment and the organisation caused a storm.

A bias against the brightest happens partly because of lack of money (governments fear they cannot afford them), and partly because other aims get in the way. Almost every rich country has sought to reduce class size lately. Yet all other things being equal, smaller classes mean more teachers for the same pot of money, producing lower salaries and lower professional status. That may explain the paradox that, after primary school, there seems little or no relationship between class size and educational achievement.

Asian values or good policy?

McKinsey argues that the best performing education systems nevertheless manage to attract the best. In Finland all new teachers must have a master's degree. South Korea recruits primary-school teachers from the top 5% of graduates, Singapore and Hong Kong from the top 30%.

They do this in a surprising way. You might think that schools should offer as much money as possible, seek to attract a large pool of applicants into teacher training and then pick the best. Not so, says McKinsey. If money were so important, then countries with the highest teacher salaries—Germany, Spain and Switzerland—would presumably be among the best. They aren't. In practice, the top performers pay no more than average salaries.

Nor do they try to encourage a big pool of trainees and select the most successful. Almost the opposite. Singapore screens candidates with a fine mesh before teacher training and accepts only the number for which there are places. Once in, candidates are employed by the education ministry and more or less guaranteed a job. Finland also limits the supply of teacher-training places to demand. In both countries, teaching is a high-status profession (because it is fiercely competitive) and there are generous funds for each trainee teacher (because there are few of them).

South Korea shows how the two systems produce different results. Its primary-school teachers have to pass a four-year undergraduate degree from one of only a dozen universities. Getting in requires top grades; places are rationed to match vacancies. In contrast, secondary-school teachers can get a diploma from any one of 350 colleges, with laxer selection criteria. This has produced an enormous glut of newly qualified secondary-school teachers—11 for each job at last count. As a result, secondary-school teaching is the lower status job in South Korea; everyone wants to be a primary-school teacher. The lesson seems to be that teacher training needs to be hard to get into, not easy.

Teaching the teachers

Having got good people, there is a temptation to shove them into classrooms and let them get on with it. For understandable reasons, teachers rarely get much training in their own classrooms (in contrast, doctors do a lot of training in hospital wards). But successful countries can still do much to overcome the difficulty.

Singapore provides teachers with 100 hours of training a year and appoints senior teachers to oversee professional development in each school. In Japan and Finland, groups of teachers visit each others' classrooms and plan lessons together. In Finland, they get an afternoon off a week for this. In Boston, which has one of America's most improved public-school systems, schedules are arranged so that those who teach the same subject have free classes together for common planning. This helps spread good ideas around. As one educator remarked, "when a brilliant American teacher retires, almost all of the lesson plans and practices that she has developed also retire. When a Japanese teacher retires, she leaves a legacy."

Lastly, the most successful countries are distinctive not just in whom they employ so things go right but in what they do when things go wrong, as they always do. For the past few years, almost all countries have begun to focus more attention on testing, the commonest way to check if standards are falling. McKinsey's research is neutral on the usefulness of this, pointing out that while Boston tests every student every year, Finland has largely dispensed with national examinations. Similarly, schools in New Zealand and England and Wales are tested every three or four years and the results published, whereas top-of-the-class Finland has no formal review and keeps the results of informal audits confidential.

But there is a pattern in what countries do once pupils and schools start to fail. The top performers intervene early and often. Finland has more special-education teachers devoted to laggards than anyone else—as many as one teacher in seven in some schools. In any given year, a third of pupils get one-on-one remedial lessons. Singapore provides extra classes for the bottom 20% of students and teachers are expected to stay behind—often for hours—after school to help students.

None of this is rocket science. Yet it goes against some of the unspoken assumptions of education policy. Scratch a teacher or an administrator (or a parent), and you often hear that it is impossible to get the best teachers without paying big salaries; that teachers in, say, Singapore have high status because of Confucian values; or that Asian pupils are well behaved and attentive for cultural reasons. McKinsey's conclusions seem more optimistic: getting good teachers depends on how you select and train them; teaching can become a career choice for top graduates without paying a fortune; and that, with the right policies, schools and pupils are not doomed to lag behind.

Source the economist

My Iraq: Child psychiatrist

Dr Haidr says most Iraqis now deal with each other in an aggressive way

Dr Haidr al-Maliki was an army psychiatrist during Saddam Hussein's regime.

He now works as a child psychiatrist at Ab Ibn Rushed Hospital in Baghdad. He lives with his wife and four children.

There used to be about 80 psychiatrists in Iraq, now there are just 20 to 25.

And some of them will leave. Fifteen or so will eventually go to the UAE or to Jordan; it's difficult.

About a year ago, during Ramadan, four boys aged about 15 to 20 came into my private clinic, in front of my patient.

They asked "Are you Dr Haidr?" I said yes. And they shot me several times.

One bullet went into my right shoulder, another into my right arm. I am left with nerve injury and muscle atrophy.

Afterwards they told me I couldn't go to my clinic and that I had to leave the country. They didn't say why.

So, now I don't go out, I just stay at home. My own private jail.

During Saddam's regime we could take our families to the cinema.

Most Iraqi people ... show disturbed behaviour

I want to drink, I want to dance, I want to visit my friends. But I can't do anything. If I even think about going for a drink in my club 500m from my house, I will be killed.

Iraqi people are living in difficult times. Most of us have been exposed to aggression: attacks in the street, car bombings, kidnappings.

Most Iraqi people now deal with each other in an aggressive way; they show disturbed behaviour; they have lost their civility.

We don't know how to treat these problems really.

But I can't leave Iraq. If I and my friends leave, who will help our people?

Limitations of care

I was asked to open the child psychiatry centre in Ab Ibn Rushed hospital, but I have no training in children, really.

I read books and I try to help.

Most of the children are suffering from post-traumatic stress disorder, especially those who have been exposed to kidnapping.

Most of the children I see are bedwetting. They have disturbed behaviour or epilepsy.

We treat them with simple medication; it is very difficult.

Most of the families come here for help and sometimes we can do nothing for them, except offer support and advice.

Alternative medicine: Coriander

Wed, 07 Nov 2007 22:20:28

By Patricia Khashayar, MD., Press TV, Tehran
Since ancient times, traditional Iranian medicine has used coriander seeds for treating anxiety and sleeping disorders like insomnia.

Botanical: Coriandrum sativum (LINN.)
Family: N.O. Umbelliferae
Synonym: Chinese Parsley, Cilantro, Dizzycorn, Japanese Parsley, kizbara

Habitat:

Coriander is probably native to the Middle East and southern Europe, but has also been known in Asia and the Orient for several millennia.

Description:

It is an annual plant with slender and branched stems. The lowest leaves are stalked and pinnate. The flowers are in shortly-stalked umbels, five to ten rays, pale mauve, almost white, delicately pretty. The seed clusters are very symmetrical and the seeds fall as soon as ripe.

Part Used Medicinally:

Fruits (so called seeds) and fresh leaves

Dried coriander leaves are mentioned in some versions of Georgian khmeli-suneli and the Iranian qorma herb mix.

Constituents:

Coriander fruit contains about 1 percent volatile oil, which is the active ingredient. It is pale yellow or colorless, and has a mild aromatic taste. The fruit contains malic acid, tannin and some fatty matter.

Medicinal Uses:

Coriander water is a carminative for windy colic. Oil extracted from its seed is an aromatic stimulant, a carminative (remedial in flatulence), an appetizer and a digesting stimulator. Recent studies have supported its use as a stomach soother for both adults and colicky babies.

Coriander seeds are also used as a diuretic by boiling equal amounts of coriander seed and cumin seed, then cooling and consuming the resulting liquid.

It is generally beneficial to the nervous system and believed to have anti seizure and anxiolytic effects

Inhalation of coriander is useful in treating sinusitis and colds. It is mainly used to mask foul tasting medicine, especially purgatives.

Coriander is believed to make individuals feel happy and is good for the heart.

Coriander cakes were once taken against 'St. Anthony's fire', or 'Rose' a severe streptococcal skin infection called 'erysipelas', which claimed many lives before the advent of antibiotics.

The herb is used to treat hemorrhoids, headache and swellings; the fruit in colic, hemorrhoids and conjunctivitis; the essential oil in colic, rheumatism and neuralgia; the seeds as a paste for mouth ulceration and as poultice for other ulcers.

Coriander is helpful in lowering serum lipids and glucose levels.
It is believed to be useful in treating benign prostate hyperplasia.

Cilantro and Coriander contain substances that kill meat-spoiling bacteria and fungi and prevent wound infections.

Preparation:

Inhalation of coriander seed 3 times a day added with drinking 2 cups of its infusion helps relieve headaches and treat sinusitis and earaches.

Having a teaspoon of coriander seed or regularly taking two capsules significantly lowers lipid levels.

Weak coriander tea may be given to children under the age 2 for colic.

Caution:

If used too freely, the seeds may cause amnesia and become narcotic. Eating too much raw coriander extract is lethal.

PKH/HGH

Gene 'links breastfeeding to IQ'

The government advises breastfeeding for first six months

A single gene influences whether breastfeeding improves a child's intelligence, say London researchers.

Children with one version of the FADS2 gene scored seven points higher in IQ tests if they were breastfed.

But the Proceedings of the National Academy of Sciences study found breastfeeding had no effect on the IQ of children with a different version.

The gene in question helps break down fatty acids from the diet, which have been linked with brain development.

Seven points difference is enough to put the child in the top third of the class, the researchers said.

In the past people have had different results about whether breastfeeding improves IQ and this would sort out the reason why Professor Jean Golding

Some 90% of people carry the version of the gene which was associated with better IQ scores in breastfed children.

Researchers at the Institute of Psychiatry, Kings College London, used data from two previous studies of breast-fed infants in Britain and New Zealand, which involved more than 3,000 children.

IQ was measured at various points between the ages of five and 13 years in the studies.

Previous studies on intelligence and breastfeeding have come up with conflicting results.

There has been some debate as to whether mothers who had more education or who were from more affluent backgrounds were more likely to breastfeed, skewing the results.

Nature versus nurture

Professor Terrie Moffitt, a co-author on the paper, said the findings gave a fresh perspective on the arguments by showing a physiological mechanism that could account for the difference between breastfed and bottle-fed babies.

HAVE YOUR SAY More scare tactics! Breastfeeding isn't for every woman and in fact some babies get on better with a bottle. Jacqueline Walton, Sawtry Send us your comments

"The argument about intelligence has been about nature versus nurture for at least a century," she said.

"However, we have shown that in fact nature works via nurture to create better health outcomes."

Since the studies used in the analysis were done, manufacturers have begun to add fatty acids to formula milk but there have been inconsistent results on the benefits.

Belinda Phipps, of the National Childbirth Trust, said: "This shows for the majority of parents they can have a positive effect on their babies IQ by breastfeeding."

Catherine Collins, a dietician at St Georges Hospital in London and spokesperson for the British Dietetic Association, said the study highlighted the interaction between nutrition and genetics.

"In this study you have an effect that suggests that nature is more important that nurture.

"If nine out of 10 babies benefit, then that is a very good chance."

But she added the study did not specify how long babies were breastfed for and it may be that even breastfeeding for a short period may be beneficial for intelligence.

Professor Jean Golding, who founded the ALSPAC study set up in the 1990s to follow the development of thousands of children in the South West of England, said the results were fascinating and they would be doing a further study of the gene.

"In the past people have had different results about whether breastfeeding improves IQ and this would sort out the reason why," she said.

Europe child porn probe nets 92

Some of the pornographic material was sold online

An investigation into a Europe-wide child pornography network has led to 92 arrests across eight countries, prosecutors say.

The network made videos of children being abused and sold them to 2,500 customers in 19 countries, says the European police force, Europol.

The films were mainly produced in Ukraine, Belgium and the Netherlands, and most of the victims were Ukrainian.

More than 40 of the arrests were made in Britain, European prosecutors say.

Police have seized thousands of computers, videos and photographs in their investigation - code named Operation Koala.

The investigation began in July 2006, when police in Australia found a video on the internet showing an adult abusing two young girls.

The girls were identified by police in Belgium and the offender, their father, was arrested.

He in turn led investigators to the producer of the video, an Italian man who operated in Belgium and the Netherlands but also owned a studio in Ukraine.

'Tailor made'

The names of 2,500 customers were recovered from his computer.

An analyst for Europol, Menno Hagemeijer, said the customers came from many different countries and all walks of life.

"We have identified schoolteachers, swimming instructors, lawyers, IT specialists," he said.

Mr Hagemeijer said the videos had been "tailor made", with customers ordering specific acts to be performed by specific children.

Twenty-three children aged between nine and 16 who were shown being abused have been identified. Twenty-one are from Ukraine and two from Belgium.

European prosecutors have stressed that the operation is continuing and there are likely to be further arrests.

Addressing the Fallout Of Newborn Screening

Government and Researchers
Seek to Reduce False Positives,
Improve Physician Education
and Follow-Up for Families

By SHIRLEY S. WANG
October 30, 2007; Page D1

The recent adoption of widespread screening of newborns for congenital health problems is saving thousands of lives every year, identifying potentially deadly conditions in time to begin treatment. But now, health-care professionals recognize that success has highlighted glitches in the system.

UNINTENDED IMPACT

Some problems have cropped up with newborn screening:

• False Positives: Second and even third tests are sometimes needed to rule out false positives and confirm the diagnoses.

• Ill-Informed Doctors: Some pediatricians aren't familiar with the screened-for conditions, or where to find specialists for treatment.

• Lack of Follow-Up: States are only beginning to track patients to monitor the long- term impact of early diagnosis.

More screening has meant more potential for erroneous test results and misdiagnoses, causing needless angst for parents. Doctors and hospital officials, who must inform new parents about the screening process, are often ill-informed about the diseases that are screened for and how they are treated. And once a diagnosis is confirmed, families may get little follow-up as they struggle with the overwhelming rigors of caring for their sick infant.

To improve the screening process, health providers and government officials are starting to expand beyond the push for more screening to also address shortcomings in the entire system. Efforts include creating a national standard for assessing screening, in order to cut down on false positives. Genetics experts are developing an online map of specialists across the country to help families find treatment. And researchers and health officials are working to educate doctors about screening and create state registries to track the long-term impact of early diagnosis.

"We're trying to see the newborn screening as a system and not a lab test," says Rani Singh, associate professor and director of the Genetics Metabolic Nutrition Program at Emory University in Atlanta, which has been working in a collaborative of southern states to improve access to genetic services.

Newborn screening has grown exponentially over the past two years -- the result of years of effort by health experts and patient advocates. All 50 states now mandate the procedure, which involves pricking the heel of an infant before the baby leaves the hospital to obtain a few drops of blood for testing. As of July, nearly 90% of U.S. babies are tested for 21 of the 29 conditions recommended by the American College of Medical Genetics, compared with 38% in 2005, according to the March of Dimes.

The conditions, many of which are metabolic disorders that interfere with how the body breaks down and absorbs nutrients, are typically rare. With some, fewer than 1 in 10,000 are afflicted. But these conditions can have devastating consequences, including mental retardation, physical disabilities or even death within days of birth. Caught early, many of these diseases are treatable, and the children can live normal lives.

"Without a good screening program in place in a state, the rest doesn't happen," says Jennifer L. Howse, president of the March of Dimes.

Yet problems can arise from the outset. For one thing, even the most accurate screening tests will identify some children as false positives. The likelihood that a test correctly identifies a case ranges from 10% to 45%, depending on the test and what score a state uses as its cutoff to define abnormal, says Brad Therrell, director of the National Newborn Screening and Genetics Resource Center, an Austin, Texas-based agency.

Hayward Genetics Center at Tulane University in New Orleans, for example, sees about seven false positives for every one baby with a true metabolic defect, according to director Hans Andersson.

To help make test results more accurate, groups of genetic experts across the country -- separated into seven "regional collaboratives" -- are carrying out a project to figure out what test cutoff scores best distinguish the true cases while minimizing false positives. The effort, funded by the Department of Health and Human Service's Health Resources and Services Administration, aims to establish a uniform cutoff score for each condition. Currently, variations in states' standards and testing procedures mean that a child who tests positive in one state might have tested negative if he or she had been born in another state.

Also, a number of medical centers that conduct "second-tier" tests to check results are getting inquiries from around the country about expanding the use of such tests before informing pediatricians or parents, according to Michael Watson, executive director of the American College of Medical Genetics, the nonprofit that puts out recommendations for screening. Second-tier tests are used by a limited number of states, either through their own state lab or contracted out to another laboratory such as the Mayo Clinic, but there are no formal national recommendations for their use yet.

Uncertainty over screening results, including false positives, can have a significant impact on families. Even when parents are later told initial results were wrong, they may still worry about their baby's health. Parents continue to take these babies more frequently to the doctor and the emergency room, according to a study that Susan Waisbren, associate professor of psychiatry at Harvard Medical School, and colleagues published last year in JAMA, the Journal of the American Medical Association.

Many organizations, including the American College of Obstetrics, say they would like to get obstetricians more involved in educating parents earlier about newborn screening to head off unnecessary angst. ACOG's committee on genetics will be publishing an opinion at the end of the year urging obstetricians to be "proactive" and offer written, video or electronic materials to patients during pregnancy, says Anthony Gregg, chairman of the committee and associate professor at the University of South Carolina School of Medicine.

The aim is to convey the importance of screening results without creating undue panic -- since many conditions can be effectively treated. When Christena Neal of Hallsville, Texas, received a call from her pediatrician on a Friday afternoon last December, she says she fell apart. "I heard the panic in him, but he was trying to be calm," Ms. Neal said. Her three-week-old son Jesse David, the doctor said, had "something wrong with his blood."

"I hung up and started bawling," Ms. Neal said. "I was so afraid he would die."

Screening results indicated the boy -- nicknamed J.D. -- likely had the metabolic disorder known as MCAD (medium chain acyl CoA dehydrogenase deficiency), which prevents his body from breaking down certain kinds of fats for energy. Infants with this condition can die in just hours if they don't eat enough food that provides usable energy to keep their blood sugar normal. The Neals' pediatrician had never treated anyone with the condition before and had printed information about MCAD from the Internet.

Fortunately, J.D. was able to get an appointment with a specialist quickly, and was started on the treatment, a special low-fat formula, even before his diagnosis was confirmed. He is now a healthy 11-month-old.

J.D is a screening success story. Yet his family's journey illustrates how screening leads to a host of other struggles. Ms. Neal makes the hourlong trek with J.D. to the geneticist every three months, and she remains vigilant about feeding him like clockwork with nutritional supplements and special foods. She has had to rush him to the emergency room four times, and had to beseech a state senator in order to get Medicaid to cover the cost of his supplements.

To improve follow-up for children like J.D., HHS's Health Resources and Services Administration, the National Newborn Screening and Genetics Resource Center, and others would like to have states monitor patients' outcomes to better understand what happens if these rare conditions are caught early. A study of 35 states published this month in the Archives of Pediatrics and Adolescent Medicine found that less than one-third of states surveyed collect long-term follow-up data, and the follow-up information varies tremendously. But some states, including California, and 16 pediatric metabolic centers in several Midwestern states have begun collecting this information, and more are starting or looking to do so, according to Cynthia Cameron, director of the Region 4 Genetics Collaborative.

Another difficulty in the follow-up process is that many pediatricians and primary-care doctors aren't familiar with these rare and complex diseases. To help better inform doctors, the American College of Medical Genetics' Web site offers a series of so-called ACT Sheets, which walk them through what to do when a baby screens positive for a rare condition, according to executive director Dr. Watson.

The group is also developing an online map of genetic specialists across the country so parents and doctors can search for treatment in their area. Dr. Watson says the map will be launched within six months.

Write to Shirley S. Wang at shirley.wang@wsj.com

Size Genetics