Researchers who work with children must take extra care to protect their interests and rights, while still providing enough answers to make the research useful to the children. However, experts at a recent AAAS event said the definition of those rights and ethical research practices continue to develop with the advent of new technologies.
Any potential harm to adults who consent to participate in research is weighed against the potential benefit to the individual plus the potential benefit to society. But the equation is different when the research subjects are children, said Eric Kodish, pediatrician and chair of the Center for Ethics, Humanities and Spiritual Care at the Cleveland Clinic.
Since children cannot give their informed consent to participate in research, researchers must err on the side of protecting individuals more than they would have to with adults, Kodish said. For instance, researchers in the United States are not allowed to consider the benefit to society when designing research studies using children. Rather, any potential harm must be balanced by a potential benefit to the individual participants.
However, trying to avoid all possible harm can result in a lack of research that benefits children, Kodish said. “In this country, we do a lot of research on sick children, and not much on healthy children. We may need to rethink that.”
Kodish was one of four presenters who discussed children’s rights in relation to scientific research during a meeting of the AAAS Science and Human Rights Coalition, held 31 January to 1 February.
“There are ethical responsibilities and human rights concerns that both elevate the need for more research involving children, and require that the research be conducted in ways that do not exploit them or violate their rights,” said Theresa Harris, senior program associate in the Scientific Responsibility, Human Rights and Law Program, which helped organize the event.
Children’s human rights have been defined in the 1989 United Nations Convention on the Rights of the Child (CRC), which has been signed and ratified by almost all members of the United Nations. (Somalia and the United States have signed it, but not ratified it; South Sudan has yet to sign the convention.) The CRC establishes basic human rights for children, such as the right of children to be treated as people rather than possessions, the right to life, to a name, to be raised by their parents, and to have a relationship with both parents (unless it is not in their best interests). It also recognizes the right to live free from abuse and exploitation, and a right to privacy.
While the CRC doesn’t specifically mention scientific research, it is the basis for other organizations’ ethical policies regarding children’s participation in research. For example, the American Psychological Association has made the convention a framework for its own policies, standards, and advocacy for children, said Gary Melton, associate director of the Kempe Center for the Prevention and Treatment of Child Abuse and Neglect in Aurora, Colorado.
“Because of its breadth, because it does represent a global consensus…the convention offers a framework, a head start in essence, for determining the things that we regard as most important and that we want to ensure get attention in our own professional work,” Melton said. However, the CRC only represents the minimal—not the optimal—requirements for children, he said. The goal is for researchers to support “that which is necessary for children to be considered as full participants in the communities of which they are part, and of which they will be a part,” Melton said. “That ought to be a fundamental goal for those of us in professions that deal with human beings.”
While the CRC’s basic protections represent a big step forward for children in many countries, there is still progress to be made, especially for disabled children, “where there is much prejudice and misconceptions that need to be overcome,” said panelist Maya Sabatello, director of the Disability Rights in Society Program at Columbia University.
Children with disabilities are significantly more likely to incur physical and sexual violence and abuse than their non-disabled peers, Sabatello said. They’re also twice as likely to be denied access to nutrition, healthcare, and rehabilitation services. These children can be regularly excluded from the social and cultural life because they’re institutionalized or live in inaccessible environments, Sabatello said. “In many countries in the developing world, they’re simply locked behind doors, or even tied to trees.”
Ninety percent of children with disabilities in developing countries do not attend school, Sabatello reported. Even something as simple as poor eyesight can become a major disability when a family can’t afford to provide glasses for a child, she said, which causes many children in developing countries to drop out of school.
The most important aspect to promote the human rights of children with disabilities, Sabatello said, is to ensure inclusion—a principle that is not mentioned in the CRC, but that was incorporated in the recently adopted Convention on the Rights of Persons with Disabilities.
“And for the principle of inclusion to be implemented we have to create accessible physical, social, and technological environments,” she said. “We have to develop affordable and disability-friendly assistive technologies that are critical for these to happen, along with the cultivation of a sense of shared responsibility among all societal actors, including scientists, in creating an inclusive society.”
Just as the scope and definitions of human rights continue to evolve, the rights of children need to be revisited to consider issues posed by new technologies and advances in science and medicine, said Michael Freeman, professor of law at University College London. “Science can both assist with children’s rights and it can harm them,” he said. For example, it can now provide cochlear implants that allow a deaf child to hear, as was the case for his grandson, he said. But science can also help deaf parents use embryo screening to choose to have a deaf child, a use Freeman opposes as being against the child’s best interest.
Reproductive technologies also raise hard questions and other cases where the child’s rights are not fully considered, Freeman said. For example, what are the rights of a child conceived to provide healthy, immunologically matching tissue for an older child suffering from an illness? Do children have a right not to be born in addition to a right to be born? What rights would a child created by cloning have?
“Children had rights before the convention was passed, and they’ve got rights now that aren’t in the convention,” Freeman said.
Learn more about the AAAS Science and Human Rights Coalition.