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Whether short forms coupled with conversation would potentiate even greater increases in understanding is a hypothesis for future consent research.
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The need for an informed and voluntary assumption of risk seems to preclude broad consent and future consent.
Fifty-six percent of the forms did not address a child's ability to dissent; 49% of the forms addressed neither assent nor the potential for future re-consent at the legal age of majority, while 30% addressed assent with qualifications such as a specific age.
The study consent form consists of three parts: the primary consent form (Part A), consent for future use and storage (Part B), and consent for genetic studies (Part C).
As descibed earlier, the difficulties of obtaining consent for future, unforeseen uses and the resources needed to go back for re-consent, if the original consent is inadequate, are a significant stumbling block to streamlined lawful and ethical data sharing.
The studies vary in breadth of initial consent, but none adopt a blanket consent for future use of samples/data.
Internationally, some have evaluated the ethical conditions that justify broad consent for future research and pointed out that a right to withdraw consent would be necessary [ 32].
Hence, broad consent may address the problem of giving consent for future use of previously collected samples and data.
All individuals whose data are in the database have provided written informed consent for future research and analysis of their data; nevertheless, all included subjects also provided written informed consent to participate in this study as well.
The Interim Procedures for Human Genetic Resources Management of 1998 states that informed consent is required for genetic international collaborations but provides for very general requirements, and blanket consent for future research.
The current policy trend is to seek an informed consent for stem cell research, in some cases requiring consent for stem cell research from both gamete donors, and it increasingly includes the option to consent for future unspecified research uses [ 35].
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com