Human Genetic Biobanks in Asia: Politics of Trust and Scientific Advancement by Margaret Sleeboom-Faulkner

Author:Margaret Sleeboom-Faulkner [Sleeboom-Faulkner, Margaret]
Language: eng
Format: epub
Tags: Medical, Ethics, Science, Life Sciences, Genetics & Genomics
ISBN: 9780710313416
Google: dmcRtQEACAAJ
Goodreads: 7306456
Publisher: Routledge
Published: 2008-12-01T00:00:00+00:00

Issues related to privacy

In Hong Kong, because relatively few genetic studies have been conducted, especially on behavioural or learning problems, parents of dyslexic children may not be fully aware of the possible consequences of their genetic data being collected and analysed. It will be important, therefore, that individual informed consent with clear explanation of rights, benefits, and risks be carried out in genetic studies, particularly when samples collected could be used and stored for a long time, such as the case with biobanking.

Many of the parents of dyslexic children in Hong Kong also worry about the labelling effect, i.e. they carry the label of having a genetically linked disability. Hong Kong parents do not normally want to disclose their child’s learning disability to the school. They are afraid that this will create a negative image for the teachers and affect their child’s learning opportunities. For some educators, a genetically linked problem may mean difficulty of remediation, though this may not be the case. The issue of possible discrimination in school will reduce the willingness of participants to donate to the biobanks.

There are strategies that may encourage people to participate in these genetic studies. Since there is general lack of understanding about the relationship between the genetic contribution to a learning disability and the impact on the remediation outcome, both parents and children may be given counselling when they learn about their genetic status of the disability, and individual results may be explained by the investigators. Alternatively, investigators may analyse the data collectively and inform the participants about group results. As a general practice, we believe that, at all times, only group results should be reported to the public.

Since the concept of biobanking studies is relatively new in Hong Kong, it would be premature to link a genetic database with a database of healthcare or education systems in Hong Kong. More research findings are required on the pattern of heritability and the association of, and interaction between, genotypes and phenotypes (e.g. nature and scope of the problem, manifestation, and persistence of the problem) before we are convinced that disclosing the genetic information to the healthcare and education systems would benefit the clients.

To ensure good participation in genetic research among the Chinese, it is especially important to develop trust. The Chinese are a collectivist society in which people place a lot of emphasis on ‘face’. Having a genetic disability may bring disgrace to the family. Some parents are reluctant to learn about the causes of their children’s learning problems. They are afraid to find out that they may be partly responsible for their children’s difficulties. The possible heritage of dyslexia is not widely known or discussed in the local community. Thus, parents might be reluctant to participate, and need more reassurance, education, and trust.

In addition, the general sense of trust within the local society of Hong Kong is relatively low. Extra measures would need to be taken to protect the privacy and benefits of the clients in order to improve their sense of trust in genetic research.

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