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People taking part in research vary in the extent to which they understand information concerning their participation. Since they may choose to limit the time and effort spent on such information, lack of understanding is not necessarily an ethical problem. Researchers who notice a lack of understanding are in the quandary of not knowing whether this is due to flaws in the information process or to participants’ deliberate choices. We argue that the two explanations call for different responses.A tool for (...) |
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Currently, some of the most significant moral issues involving genetic links relate to genetic knowledge. In this paper, instead of looking at the frequently addressed issues of responsibilities professionals or institutions have to individuals, I take up the question of what responsibilities individuals have to one another with respect to genetic knowledge. I address the questions of whether individuals have a moral right to pursue their own goals without contributing to society's knowledge of population genetics, without adding to their family's (...) |
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The emerging international biomedical law tends to recognise the right not to know one’s genetic status. However, the basis and conditions for the exercise of this right remain unclear in domestic laws. In addition to this, such a right has been criticised at the theoretical level as being in contradiction with patient’s autonomy, with doctors’ duty to inform patients, and with solidarity with family members. This happens especially when non-disclosure poses a risk of serious harm to the patient’s relatives who, (...) |
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Knowledge is generally a good thing. People who know lots of bits of information are generally admired. Some of them win prizes in TV competitions. If you were offered the gift of having an entire encyclopedia wired into your brain, you would probably accept, without thinking. But we should be wary of assuming that all knowledge is good. Too much knowledge can inhibit rather than enable thought. |
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People have a powerful interest in geneticprivacy and its associated claim to ignorance,and some equally powerful desires to beshielded from disturbing information are oftenvoiced. We argue, however, that there is nosuch thing as a right to remain in ignorance,where a right is understood as an entitlementthat trumps competing claims. This doesnot of course mean that information must alwaysbe forced upon unwilling recipients, only thatthere is no prima facie entitlement to beprotected from true or honest information aboutoneself. Any claims to be (...) |
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