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Researchers are required to consider the likelihood of making any such findings and to have an 'ethically defensible plan' to withhold or disclose these.
Following the ethically defensible plan, after discussion with a cancer geneticist, the listed next of kin, the participant's son, was sent a letter with an invitation to contact the research team to discuss results.
It is relevant that mechanisms to manage these processes, such as an ethically defensible plan, are considered from the outset, formally documented and implemented in a multi-disciplinary environment.
The Australian National Statement on ethical conduct in Human Research (2007) section 3.5.1 states 'Where research may discover or generate information of potential importance to the future health of participants, or their blood relatives, researchers must prepare and follow an ethically defensible plan to disclose or withhold that information'.
Human research ethics committees are obliged under Australian ethical guidelines to review the appropriateness of plans to communicate results or not to do so, but interestingly only 3 of 14 committees acknowledged the ethically defensible plan, or made remarks on the return of results issue in any way.
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But the best reason for adopting the ideas here is that my suggested process, properly executed, has the best chance of resulting in solid, non-partisan, defensible plans that are good for America and can get past the gridlock in Congress.
The ACT framework is designed to motivate collaborative, scientifically defensible planning and decision-making for specific landscapes or seascapes by a multidisciplinary group of practitioners.
No matter how defensible the plan for military action in Syria might be; no matter how strong the impulse to punish the use of long-banned weapons; no matter how many assertions of limited engagement are made, Americans and their representatives in Congress appear finally resistant to buying the war-makers' tonic (some might say 10 years too late).
"Without these important preliminary steps of listing and critical habitat designation, it would be impossible to develop a scientifically valid and legally defensible recovery plan for declining species," said Representative Norm Dicks (D-WA) earlier this week.
The lack of a defensible resource allocation plan could lead to costly and contentious conservation strategies that do not protect biodiversity, impeding additional global funding to one of the world's most biodiverse and threatened regions.
When households, firms and state and local governments are cutting their debts, the federal government would have made the recession worse by doing the same.Less defensible are the plans for reducing the deficit in the future.
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Justyna Jupowicz-Kozak
CEO of Professional Science Editing for Scientists @ prosciediting.com