Merlo D F, Knudsen L E, Matusiewicz K, Niebrój L, Vähäkangas K H
Epidemiology and Biostatistics, Istituto Nazionale per la Ricerca sul Cancro, Largo Rosanna Benzi 10, 16132 Genova, Italy.
J Med Ethics. 2007 Jul;33(7):408-13. doi: 10.1136/jme.2006.016212.
Children, because of age-related reasons, are a vulnerable population, and protecting their health is a social, scientific and emotional priority. The increased susceptibility of children and fetuses to environmental (including genotoxic) agents has been widely discussed by the scientific community. Children may experience different levels of chemical exposure than adults, and their sensitivity to chemical toxicities may be increased or decreased in comparison with adults. Such considerations also apply to unborn (fetal exposure) and newborn (neonatal exposure) children. Therefore, research on children is necessary in both clinical and environmental fields, to provide age-specific relevant data regarding the efficacy and safety of medical treatments, and regarding the assessment of risk from unintended environmental exposure. In this context, the stakeholders are many, including children and their parents, physicians and public health researchers, and the society as a whole, with its ethical, regulatory, administrative and political components. The important ethical issues are information of participants and consent to participate. Follow-up and protection of data (samples and information derived from samples) should be discussed in the context of biobanks, where children obtain individual rights when they become adults. It is important to realise that there are highly variable practices within European countries, which may have, in the past, led to differences in practical aspects of research in children. A number of recommendations are provided for research with children and environmental health. Environmental research with children should be scientifically justified, with sound research questions and valid study protocols of sufficient statistical power, ensuring the autonomy of the child and his/her family at the time of the study and later in life, if data and samples are used for follow-up studies. When children are enrolled, we recommend a consent dyad, including (1) parental (or legal guardian) informed consent and (2) the child's assent and/or informed consent from older minors. For evaluation of the studies including children, a paediatrician should always be involved in the research ethics committee.
由于与年龄相关的原因,儿童是弱势群体,保护他们的健康是社会、科学和情感方面的优先事项。科学界已广泛讨论了儿童和胎儿对环境(包括遗传毒性)因素的易感性增加的问题。儿童接触化学物质的水平可能与成人不同,并且与成人相比,他们对化学毒性的敏感性可能会增加或降低。这些考虑也适用于未出生的胎儿(胎儿接触)和新生儿(新生儿接触)。因此,临床和环境领域都有必要对儿童进行研究,以提供关于医疗治疗的有效性和安全性以及意外环境接触风险评估的特定年龄相关数据。在这种情况下,利益相关者众多,包括儿童及其父母、医生和公共卫生研究人员,以及整个社会及其伦理、监管、行政和政治组成部分。重要的伦理问题是参与者的信息和参与同意。应在生物样本库的背景下讨论数据(样本和从样本中获得的信息)的随访和保护,儿童成年后在生物样本库中享有个人权利。必须认识到,欧洲国家的做法差异很大,过去可能导致儿童研究实际方面的差异。本文为儿童与环境健康研究提供了一些建议。针对儿童的环境研究应具有科学依据,具备合理的研究问题和具有足够统计效力的有效研究方案,确保研究时以及日后如果数据和样本用于随访研究时儿童及其家庭的自主性。当招募儿童时,我们建议采用二元同意,包括(1)父母(或法定监护人)的知情同意以及(2)儿童的同意和/或年龄较大的未成年人的知情同意。对于包含儿童的研究评估,儿科医生应始终参与研究伦理委员会。