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Spanish HIV registry should be abolished, court rules
MEDICINE AND HEALTH POLICY
Pregnancy complications kill 70 000 teenagers a year K charity Save the Children has called for increased funding for education projects worldwide to empower tens of millions of girls to delay early marriages and motherhood. “One in every 10 births in the world today is to a mother who is still a child herself—some as young as 11 and 12 years old. We need to give girls the opportunity to go to school and stay in school”, Mary Beth Powers of Save the Children, told The Lancet. In its annual State of the World’s Mothers report, Save the Children identified countries that pose the greatest risk to young girls and their babies. Of the 10 worstranked countries, nine are in sub-Saharan Africa. Niger, Liberia, and Mali top the list. According to the report, complications of pregnancy and childbirth claim the lives of around 70 000 teenage girls each year. Many of those who survive suffer permanent injuries. “Obstructed labour is common and can result in painful and often humiliating
U
Panos Pictures
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Educational health programmes to teach teenage girls about sex could save thousands of lives
disabilities such as the inability to control bladder or bowels. These girls and their babies are at greater risk of contracting HIV/AIDS”, Powers explains. The prospects for their babies are equally tragic. For example, each year an estimated 1 million infants born to teenage girls die in the first year of their life.
“We know from research that babies born to girls in their teens have a 50% higher risk of dying than babies born to mothers in their twenties. And the babies that do survive are more likely to be premature and low birth weight”, she says. The report also recommends increased funding for maternal health services,
child survival and family planning programmes. “Health programmes often do not reach teenage girls”, says Powers. “Health services, such as voluntary family planning and reproductive health services must be tailored to meet these young girls’ needs.” Khabir Ahmad
Spanish HIV registry should be abolished, court rules he Spanish National Court ruled last week that the national registry of HIV-infected individuals must be abolished. The verdict was applauded by HIV advocates who last year filed a lawsuit against the health ministry, arguing that the database did not respect anonymity. Several organisations have criticised the Information System on New HIV Infections (SINVIH), since its approval through a ministerial order in December, 2000, alleging that the database violated the right to intimacy and did not guarantee confidentiality. The register, which has gathered 70 000 personal files over the past 3 years, tabulates HIV patients’ initials; the health centre where HIV was diagnosed; date of birth; town of residence; nationality; and clinical and laboratory data—15 characters in total. But the Madrid-based National Court
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ruled in favour of the complainants, saying that “tabulated data . . . make possible the identification of a person with a high level of evidence”. Judge Juan Carlos FernándezAguirre stated that the annulled ministerial order “does not fulfil adequate measures to preserve the privacy of [the people in the registry], since its structure allows third parties to get information through manipulation”. He also said the order “does not contemplate any guarantee to prevent a potentially intrusive use of citizens’ private life”. HIV patients agree that there should be a register; however, they argue that the inclusion of individuals’ initials may be used to identify a person, resulting in potential job losses or refusal of loans or insurance. However, the ministry justified their inclusion in order to avoid data duplication.
The ministry announced on May 6 that it would appeal the decision. Manuel Oñorbe, director of Public Health, said the register was a useful tool to investigate the epidemiology of HIV in Spain, adding that it “fulfils the requirements of data protection and intimacy of the Data Protection Law”. In a statement, minister Elena Salgado said that SINVIH “may be improved” and that the ministry was keen to begin talks with involved organisaitons to “search for joint solutions”. According to Joan Tallada, president of the “Working Group on HIV Treatments”, one solution is a “total encryption of data”. However, Spanish epidemiologists have argued against encryption since error margins could be greater, they say. Xavier Bosch
THE LANCET • Vol 363 • May 15, 2004 • www.thelancet.com
For personal use. Only reproduce with permission from The Lancet.
Pregnancy complications kill 70 000 teenagers a year K charity Save the Children has called for increased funding for education projects worldwide to empower tens of millions of girls to delay early marriages and motherhood. “One in every 10 births in the world today is to a mother who is still a child herself—some as young as 11 and 12 years old. We need to give girls the opportunity to go to school and stay in school”, Mary Beth Powers of Save the Children, told The Lancet. In its annual State of the World’s Mothers report, Save the Children identified countries that pose the greatest risk to young girls and their babies. Of the 10 worstranked countries, nine are in sub-Saharan Africa. Niger, Liberia, and Mali top the list. According to the report, complications of pregnancy and childbirth claim the lives of around 70 000 teenage girls each year. Many of those who survive suffer permanent injuries. “Obstructed labour is common and can result in painful and often humiliating
U
Panos Pictures
Rights were not granted to include this image in electronic media. Please refer to the printed journal.
Educational health programmes to teach teenage girls about sex could save thousands of lives
disabilities such as the inability to control bladder or bowels. These girls and their babies are at greater risk of contracting HIV/AIDS”, Powers explains. The prospects for their babies are equally tragic. For example, each year an estimated 1 million infants born to teenage girls die in the first year of their life.
“We know from research that babies born to girls in their teens have a 50% higher risk of dying than babies born to mothers in their twenties. And the babies that do survive are more likely to be premature and low birth weight”, she says. The report also recommends increased funding for maternal health services,
child survival and family planning programmes. “Health programmes often do not reach teenage girls”, says Powers. “Health services, such as voluntary family planning and reproductive health services must be tailored to meet these young girls’ needs.” Khabir Ahmad
Spanish HIV registry should be abolished, court rules he Spanish National Court ruled last week that the national registry of HIV-infected individuals must be abolished. The verdict was applauded by HIV advocates who last year filed a lawsuit against the health ministry, arguing that the database did not respect anonymity. Several organisations have criticised the Information System on New HIV Infections (SINVIH), since its approval through a ministerial order in December, 2000, alleging that the database violated the right to intimacy and did not guarantee confidentiality. The register, which has gathered 70 000 personal files over the past 3 years, tabulates HIV patients’ initials; the health centre where HIV was diagnosed; date of birth; town of residence; nationality; and clinical and laboratory data—15 characters in total. But the Madrid-based National Court
T
1616
ruled in favour of the complainants, saying that “tabulated data . . . make possible the identification of a person with a high level of evidence”. Judge Juan Carlos FernándezAguirre stated that the annulled ministerial order “does not fulfil adequate measures to preserve the privacy of [the people in the registry], since its structure allows third parties to get information through manipulation”. He also said the order “does not contemplate any guarantee to prevent a potentially intrusive use of citizens’ private life”. HIV patients agree that there should be a register; however, they argue that the inclusion of individuals’ initials may be used to identify a person, resulting in potential job losses or refusal of loans or insurance. However, the ministry justified their inclusion in order to avoid data duplication.
The ministry announced on May 6 that it would appeal the decision. Manuel Oñorbe, director of Public Health, said the register was a useful tool to investigate the epidemiology of HIV in Spain, adding that it “fulfils the requirements of data protection and intimacy of the Data Protection Law”. In a statement, minister Elena Salgado said that SINVIH “may be improved” and that the ministry was keen to begin talks with involved organisaitons to “search for joint solutions”. According to Joan Tallada, president of the “Working Group on HIV Treatments”, one solution is a “total encryption of data”. However, Spanish epidemiologists have argued against encryption since error margins could be greater, they say. Xavier Bosch
THE LANCET • Vol 363 • May 15, 2004 • www.thelancet.com
For personal use. Only reproduce with permission from The Lancet.