Sickle cell testing of athletes stirs discrimination fears

By Rob Stein
Washington Post Staff Writer
Monday, September 20, 2010; 12:19 AM

U.S. colleges and universities for the first time are requiring top student athletes to submit to testing for the gene for sickle cell anemia, a mandate aimed at preventing sudden deaths of promising young players but stirring deep fears about reviving dangerous old prejudices.
The screening hopes to identify athletes at high risk for life-threatening complications from intense physical exertion. That way, those with the gene could be monitored more closely and their training could be modified by, for example, allowing more time for rest and drinking more water.
But the prerequisite is evoking some of the most notorious episodes in the nation's history. While less known than the infamous Tuskegee syphilis experiment, for decades blacks were stigmatized by sickle cell because they carried it far more commonly than whites, marking them as supposedly genetically inferior, barring them from jobs, the military, insurance and even discouraging them from marrying and having children.
"This amounts to a massive genetic screening program, with tens of thousands being screened," said Troy Duster, a professor of sociology at New York University who studies the racial implications of science. "This could have an extraordinarily heavy impact on black athletes. You are going to be picking out these kids and saying, 'You are going to be scrutinized more closely than anyone else.' That's worrisome."
The testing is being watched closely as a case study in both the potential benefits and risks of large-scale modern genetic screening, which is proliferating as the genetic bases for more and more diseases are being deciphered.
"This could be a tip of an iceberg of genetic screening as we go forward," said Vence L. Bonham of the National Institutes of Health's National Human Genome Research Institute. "Getting it right is important, especially this one being the first one out of the gate."
Although endorsed by some doctors, sports officials, athletes and parents, the testing has raised objections from both the Sickle Cell Anemia Association of America and a federal panel that advises the government on issues related to genetic testing.
"We're very concerned that identifying someone as a carrier could be discriminatory," said R. Rodney Howell, who chairs the Health and Human Services Department's Advisory Committee on Heritable Disorders in Newborns and Children, which sent a letter to HHS Secretary Kathleen Sebelius in June expressing concern about the program. "There is no need to single out this group."
The National Collegiate Athletic Association mandated the testing in April in response to a lawsuit filed by the family of Dale Lloyd II, a 19-year-old African American freshman at Rice University who died after an intense football workout in 2006 and was later discovered to have had the sickle cell trait.
"We want to prevent this from happening to anyone else," said Lloyd's mother, Bridgette Lloyd of Houston. "Coaches and trainers need this knowledge. We don't want another young person to lose their life because of a lack of information."
Under the policy, as of Aug. 1 all new students joining NCAA Division I teams, regardless of race, must be tested for the sickle cell trait - a requirement affecting about 170,000 student-athletes. No one will be excluded from sports or restricted in training or playing based on the results, officials said. Rather, athletes who test positive will be conditioned more carefully and watched more closely to ensure they drink enough and avoid overexertion, especially on hot days and in high altitudes. The NCAA is considering expanding the testing to Division II and III players, which would extend the order to about 260,000 more students.
"We're trying to protect the health and well-being of our student athletes," said Yvette Rooks, the University of Maryland's team physician, who served on the NCAA committee that recommended the policy. "One death is too many. Anything we can do to prevent it and help people be healthier is important."
Sickle cell anemia creates sickle-shaped red blood cells, which block vessels, causing chronic problems with intense pain, life-threatening infections and organ damage.
A person born with two copies of the gene gets the illness. People who carry only one - known as having the sickle cell trait - are generally healthy. But during highly stressful physical exertion their blood cells can become sickle-shaped, preventing the delivery of oxygen to tissues and organs. Since 2000, as many as 10 Division I college football players who had the trait without knowing it have died suddenly following workouts.
"There have been players who cease activity on a hot day because of complaints of fatigue - they are sweating heavily and cramping and not understanding the evidence of sickling. Those cases have been managed as exertional heat illness - and it wasn't, with tragic consequences," said Scott A. Anderson, head athletic trainer at the University of Oklahoma, who has spearheaded the drive for testing. "The more you know, the better the athlete can protect themselves."
Students can opt out if they prove that they have already been tested or sign a waiver insulating their school from liability, though the NCAA is considering revoking that option. Even if students can refuse, critics worry that they will fear antagonizing coaches or other athletic officials, putting their scholarships and possible future professional careers in jeopardy. Coaches may be hesitant to intensively train and play those who test positive, and professional teams may be less inclined to draft them.
"The stigma and its consequences - both self-imposed and done by coaches, peers, and the institution - are likely to be far, far out of proportion to the actual risk," said Duster, who chaired the Human Genome Project's National Advisory Committee on Ethical, Legal and Social Implications.
While acknowledging that the trait may carry some risk, critics of the new policy also say the magnitude remains far from clear. Many athletes with the trait play safely in extreme conditions. And athletes who do not carry the gene have suddenly died for other reasons, most notably heart problems.
"What doesn't exist is scientific data to support the screening," said Elliott Vichinsky, director of hematology-oncology at Children's Hospital in Oakland and director of the Northern California Sickle Cell Center. "There are a lot of other people at risk for heat-related illness from exertion."
The best solution, they argue, would be better monitoring, training and care for all athletes - a strategy that worked for the military. That would avoid targeting the estimated 8 percent of blacks who carry the sickle cell trait gene, compared with about 0.2 percent of whites and 0.5 percent of Hispanics. In 2008-09, 24.8 percent of male Division I student-athletes and 16 percent of female Division I student-athletes were black, according to NCAA statistics.
"If you want to protect people, there's an easy way to do that: change the training protocol for everyone," said Lanetta Jordan, the Sickle Cell Disease Association of America's chief medical officer.
In addition, critics worry that students who test positive for the trait and their families will misinterpret the results as meaning they have sickle cell anemia, particularly if the news is not delivered by a doctor or genetic counselor.
"If you are going to test for sickle cell trait, it should not be done in the locker room by a coach," Howell said.
But supporters argue that such concerns are easily outweighed by the benefits.
"There have been no known case of any athletes being denied participation in sport because of their sickle trait status," Anderson said. "Information beats ignorance."
Others, while raising questions about the testing, hesitate to condemn the program as ill-conceived.
"I see it as an experiment," said Lawrence C. Brody, also of the National Human Genome Research Institute. "It's an opportunity for us to learn."

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University race quotas row in Brazil

By Gary Duffy, BBC News, Rio de Janeiro

Many Brazilian universities have already adopted affirmative action policies

There are more people of African descent in Brazil than in any country outside the African continent itself, but the higher you go in Brazilian society the less evidence there appears to be of that reality.

Critics say part of the blame lies with a system which has often failed to provide equality of access to third-level education, though recent years have seen some improvements.

To try to address the problem, many Brazilian universities have adopted affirmative action policies or quotas to try to boost the number of black and mixed race students, or more generally those from poor backgrounds.

Gisele says the quotas system has given her a head-start

It is a controversial approach which some argue is necessary to end decades of inequality, while others fear it threatens to introduce racial tension in a society which has been largely free of such problems.

Gisele Alves lives in a poor neighbourhood in Nova Iguacu on the outskirts of Rio de Janeiro, and says she doubts she would have got to college without a helping hand from the state.

She is studying at the State University of Rio de Janeiro (UERJ), which was one of the first to adopt quotas.

"I thought I was going to finish school, find work in a little shop, get married and pregnant and that would be it. I didn't expect much more than that," she says.

"But with the system of quotas I started to think I could go to university. My parents couldn't pay privately - if I wanted to study it had to be at a public university."

Giselle got her place in part due to Rio's controversial quotas system which sets aside 20% of public university places for poor black and indigenous students, and the same number for students educated in the much criticised public school system.

Legal challenge

Those parents who can afford it often opt to have their children educated in more expensive private schools, giving them a considerable advantage when it comes to highly competitive university entrance exams - especially for prestigious courses such as law and medicine.

Mr Bolsonaro says the quotas approach is a form of reverse discrimination

It is a process which works against poorer students - which in Brazil often means black or mixed race.

"When you consider the way things are in Brazil, you can see that poverty has a colour," says Lena Medeiros de Menezes, vice rector at the State University.

"It will take a long time for investment in primary and secondary education to bring about equality. How do I see quotas? It's a way to change things and change them rapidly."

But in Rio de Janeiro a question mark hangs over the quotas system after a legal challenge mounted by state congressman Flavio Bolsonaro.

He argues the approach is a form of reverse discrimination.

"What are you going to say to a teenager who goes to do a university entrance exam and gets a high mark, but doesn't get through, but another teenager has passed with a much lower mark because they have a dark skin?" he says.

"What would be the legacy of that for future generations?"

White or black?

Rio's Federal University (UFRJ) does not operate a system of quotas, though the issue has been widely debated.

Prof Paixao says black Brazilians are largely absent from key professions

Professor Marcelo Paixao, who lectures there, says it is clear that in Brazil those of African descent are largely absent from many key professions.

"Here the percentage of black people holding jobs - such as doctors, engineers, economists, lawyers - is very low," he says.

"When you have universities - principally the most prestigious ones which are the public ones - so closed to presence of the Afro-descendent population, this means these professions will also continue to be exclusive to a certain group of people for a very long time."

The debate in Brazil is further complicated because of the sometimes uncertain definition here of who is white, black or mixed race - official surveys let people classify themselves.

Hundreds of years of racial mixing means that many Brazilians regard themselves as neither black nor white but something in between, and recent surveys suggest some people have even changed their view of how they should be described.

Racial equality law

Some argue that quotas even partly based on race introduce a tension that never existed in Brazilian society in the way it has in the United States, while others say it simply recognises the obvious link between being poor and black.

You can not force a racial identity in a population where a large percentage of the population don't have a clear racial identity and don't want that Simon Schwartzman Brazilian researcher

"I think the main issue has to do with poverty and the bad quality of basic education," says Simon Schwartzman, senior researcher at the Institute of Studies of Work and Society in Rio de Janeiro.

"People who are poor don't have access to good education; they have more difficulty in having access, in particular to the more prestigious courses. It is a question of poverty not of race.

"There are good reasons to be against race quotas in Brazil - I don't think it makes any sense at all. For people who are poor and didn't have a good education, I think there is a good argument for that, provided you do it properly.

"You can not force a racial identity in a population where a large percentage of the population don't have a clear racial identity and don't want that. If you look at the population and ask people 'what is your race?' - many people won't know exactly what to answer.

"That is not to say that you don't have prejudice, that the fact that you are black you don't suffer, because you do. You should do specific things about that, but not to institute a kind of national policy based on race," Mr Schwartzman says.

For a future generation of students this complicated question has still to be finally resolved.

A long-debated law on racial equality only recently passed an important stage in congressional approval by avoiding controversial issues such as quotas.

It appears the final word may be left to the country's Supreme Court which is due to give its views on the matter in the year ahead.

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Contrôles au faciès : scandaleux, mais aussi inefficaces

Par Chloé Leprince

Créé 06/30/2009 - 13:10

Deux chercheurs du CNRS publient, pour le compte de l'Open Society Institute, la fondation de Georges Soros [1], une enquête statistique alarmante sur le contrôle au faciès : un Arabe est sept à huit fois plus contrôlé qu'un Blanc par la police française. Pour un Noir, c'est six fois plus probable.

Cette étude, menée dans une grande discrétion, a permis de passer au crible 525 opérations de police, entre octobre 2007 et mai 2008, dans deux points de grande affluence de la capitale : Chatelet et la Gare du Nord.

En France, où les statistiques ethniques continuent de faire débat, aucune étude ne se basait jusque-là sur des chiffres précis associés aux dénominations « Arabe », « Blanc » ou « Noir ». Seules des enquêtes déclaratives existaient, sur le sentiment de discrimination [2].

Cette fois, les deux universitaires entendaient comparer le traitement policier envers les Arabes ou les Noirs et celui envers les 37 000 personnes qui se trouvaient allentours. En particulier lorsqu'ils sont jeunes, puisque les deux auteurs, Fabien Jobard et René Lévy, relèvent aussi l'influence du look des interpellés. Au point de faire le rapprochement avec les émeutes de 2005 et de parler de sentiment de « harcèlement » chez les jeunes contrôlés.

Ça discrimine, mais en plus ça ne marche pas !

Ces chiffres, publiés ce mardi 30 juin, sont édifiants. Mais ils se doublent d'un autre enjeu : celui de l'inefficacité de ces moeurs policières. Alors que la Préfecture de Paris a manifesté son « intérêt » pour l'enquête, on sait que le contrôle au faciès non seulement discrimine mais qu'en plus, il ne marche pas.

C'est ce que nous apprenait déjà l'Open Society Institute [3] au printemps, dans une enquête sur le « profilage ethnique » (ou « l'utilisation par les forces de l'ordre de généralisations fondées sur l'ethnicité, la race, la religion ou l'origine ethnique pour fonder leurs décisions de lancer des opérations »).

Dans ce dossier publié le 26 mai [4], l'institut de la Fondation Soros écrivait que la pratique s'était banalisée, en particulier depuis les attentats contre le World trade center :

« Depuis les attentats du 11 septembre, on note un surcroît d''intérêt pour le profilage ethnique, et le recours à cette pratique s'est fortement intensifié. Même si le public européen tend à condamner les cas d'abus les plus scandaleux (tels que la séquestration et la torture) associés à la “guerre contre le terrorisme”, nombreux sont ceux qui considèrent le profilage des musulmans comme une nécessité. »

Inefficace pour prévenir les attentats de 2005 à Londres

Cette étude de portée européenne montre que, dans la plupart des pays européens, le profilage ethnique s'est imposé. Ainsi, en Grande-Bretagne, seul pays de l'Union européenne à collecter systématiquement les données ethniques dans les pratiques policières, les Britanniques d'origine asiastique ont été cinq fois plus contrôlés à partir des attentants dans le métro de Londres, à l'été 2005.

Or les mêmes auteurs, déjà formels, écrivaient qu'il n'existe « aucune preuve que le profilage ethnique puisse prévenir les actes criminels ou les actes de terrorisme ». Et, un peu plus loin :

« A vrai dire, le profilage réduit en fait la sécurité, car il oriente les ressources de police vers de fausses pistes, et lui aliène certranes personnes dont la coopération aurait été nécessaire pour repérer efficacement des actes criminels. »

Autre exemple londonien : un rapport présenté aux Communes en mai 2006 [5] de la Commission parlementaire sur le renseignement et la sécurité montre que les cerveaux de ces attentats de juillet 2005 dans la capitale britannique n'avaient pas été poursuivis même s'ils étaient connus des services de police, dans la mesure où trop peu de cases correspondant à un prétendu « profil de terroriste » avaient été cochées.

A l'inverse, en Espagne, une petite ville près de Madrid, Fuenlabrada, avait essayé fin 2007 d'abaisser le nombre de contrôles, de 958 à 396, abonnant le critère éthnique pour mieux se concentrer sur de vrais faisceaux d'indices. Résultat : les contrôles se soldant par la détection d'un acte criminel ou d'une infraction avaient bondi de 6% à 28%.

La politique migratoire a infusé les pratiques policières

A l'époque, la Fondation Sorros recommandait une « décision cadre » de l'Union européenne qui prohiberait explicitement le profilage ethnique, théoriquement illégal en France, comme le rappelait récemment un juge rennais [6].

Pas de signes de changement du côté de Bruxelles, mais des chiffres français qui viennent étayer avec précision l'ancrage de cette pratique dans l'Hexagone, notamment à la faveur de la politique d'immigration.

Au moment du débat sur les lois Pasqua de 1993, l'introduction de la notion d'« origine ethnique » dans la loi sur les flux migratoires avait été très décriée. Dans une vidéo de l'époque, les syndicats de policiers reconnaissaient pourtant explicitement contrôler sur la base du faciès, même si l'Intérieur venait de préconiser la prise en compte, encore vague, « d'autres indices ». (Voir la vidéo)

« Il faut regarder la composition ethnique des environs »

Aujourd'hui, à l'UNSA police [7], Yannick Danio confirme que « des consignes sont données oralement, qui relèvent bien du contrôle sur la couleur de la peau ou l'apparence ethnique » :

« Si vous êtes à Calais et que vous devez faire du chiffre, qu'est-ce qui ressemble plus à un Afghan ou à un Irakien qu'un Afghan ou un Irakien ? »

Il assure toutefois que, pour le reste, y compris les contrôles aux abords de la Gare du Nord ou des Halles, à Paris, « on n'arrête que sur flagrance ou dans le cadre d'une enquête ». Quid des ratios mis en avant par l'étude ? Moyennement convaincant : « Il faut regarder la composition ethnique des environs. »

Moussa, lycéen : « Etre d'origine étrangère ne veut plus rien dire » [8]

A Rennes, la justice refuse les contrôles au faciès [9]

Le site de la fondation Soros [10]

L'enquête du 26 mai de l'Open Society Institute [11]

Le rapport britannique sur le cerveau des attentats de 2005 (en anglais) [12]

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URL source: http://www.rue89.com/2009/06/30/controles-au-facies-scandaleux-mais-aussi-inefficaces

Liens:
[1] http://www.soros.org/
[2] http://www.rue89.com/tag/discriminations
[3] http://www.soros.org/
[4] http://www.soros.org/initiatives/osji/articles_publications/publications/profiling_20090526/french_20090609.pdf
[5] http://www.official-documents.gov.uk/document/cm67/6785/6785.pdf
[6] http://www.rue89.com/2007/12/19/a-rennes-la-justice-refuse-les-controles-au-facies
[7] http://police.unsa.org/
[8] http://www.rue89.com/2009/05/11/moussa-lyceen-etre-dorigine-etrangere-ne-veut-plus-rien-dire
[9] http://www.rue89.com/2007/12/19/a-rennes-la-justice-refuse-les-controles-au-facies
[10] http://www.soros.org/
[11] http://www.soros.org/initiatives/osji/articles_publications/publications/profiling_20090526/french_20090609.pdf
[12] http://www.official-documents.gov.uk/document/cm67/6785/6785.pdf
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