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O tema apresentado pelo texto a) propõe o uso do “blank - UNIFESP 2003

Leia o texto Gene banks and blanket consent e responda a questão, identificando a alternativa correta, com base nas informações fornecidas.

Ethics Watch

Gene banks and blanket consent

Academic and industry researchers are understandably excited about the scientific and therapeutic potential presented by gene banks. Emerging areas of research, such as pharmacogenetics, require access to large pools of genetic data, which are of greatest scientific value when linked to identifiable personal information. For example, links between genetic information and health data are required to study gene-environment interactions effectively.
The ethical challenges that are associated with gene banks have attracted much attention from both academics and policy makers, as highlighted by the UK Human Genetics Commission’s (1999) report. However, the issue of consent is particularly problematic for researchers. A strict application of many countries’ consent laws requires researchers to obtain informed consent for the use of all identifiable genetic information and a fresh consent for new research projects, and to allow participants to withdraw their sample at anytime. Following these legal requirements is tremendously difficult for research involving large gene banks.
This dilemma has been dealt with through the increasing use of “blanket consent”. Although onetime consents simplify the research process, the legal challenges associated with them have been underplayed. Because blanket consents are necessarily vague, they are too general to have much legal weight. Moreover, they do not allow patients to act meaningfully on their continuing right to control their health information. As such, most types of blanket consent fall “far short of true informed consent” (Greely 1999).
Given this legal uncertainty, adopting comprehensive blanket consent policies will require many countries to change their existing consent laws, requiring statutory amendments or legislation. However, creating new consent policy poses several significant challenges. First, there is some evidence that the public would not feel comfortable with a lowering of the legal standard to facilitate research. Indeed, a survey in 2001 of Canadians found that 90% strongly agree (61%) or agree (29%) that genetic information is different and that rules governing access to it should be stricter (Report for the BADMCC 2001).
Second, jurisdictional variation in how this consent issue is addressed could add to the challenge of organizing large, multi-site research initiatives. In Canada,for example, the handling of health information is a provincial matter. As such each of the ten provinces will need to craft legislation to address
this topic.
Finally, governments need to consider carefully the broader social impact of changing consent law. Is it really time to jettison the well-established autonomydriven view of consent? What additional safeguards will be needed to make such a change ethically sound?

(Timothy Caulfield, Extraído de Nature Reviews/Genetics)

Vocabulário para a questão.

• gene banks = bancos de genes
• blanket consent = consentimento sem restrições
• understandably = compreensivelmente
• to require = exigir
• value = valor
• links = elos, ligações
• health data = dados de saúde
• gene-environment interactions = interações genético-ambientais
• challenges = desafios
• highlighted = enfatizados
• report = relatório
• however = entretanto
• issue = questão
• laws = leis
• to allow = permitir
• to withdraw = retirar
• sample = amostra
• anytime = a qualquer hora
• to be dealt with = ser tratado
• one-time consents = novos consentimentos
• to be underplayed = ser diminuído (em importância)
• weight = peso
• moreover = além do mais
• meaningfully = significativamente, expressivamente
• right = direito
• as such = como tal
• to fall far short = ficar muito aquém
• comprehensive = amplo
• policies = políticas
• statutory = regulamentadas, legais
• amendments = emendas
• to pose = representar
• lowering = diminuição
• indeed = na verdade
• survey = levantamento, pesquisa
• to strongly agree = concordar plenamente
• rules = regras
• stricter = mais rígido
• to be addressed = ser dirigido, tratado
• to add = adicionar, somar
• handling = manejo, manipulação
• matter = questão, assunto
• to craft = elaborar
• carefully = cuidadosamente, com atenção
• broader = mais amplo
• to jettison = livrar-se de
• safeguards = garantias
• sound = perfeito

O tema apresentado pelo texto

1. propõe o uso do “blanket consent” como solução.

2. refere-se especificamente às condições encontradas no Canadá.

3. encontra-se no âmbito geral da ética médica.

4. foi discutido e resolvido pela UK Human Genetics Commission em 1999.

5. é uma questão jurídica que deverá ser aprovada pelos bancos de genes e pelos pesquisadores.

Solução