Anne-Marie O’Leary GPST12012

What ethical issues are there here?

Autonomy  Informed consent to genetic testing is paramount to maintaining autonomy  Informed consent can only take place if parents are aware of risks and limitations of testing, as well of the benefits. Also need to be aware of options after testing  This information needs to be delivered in an unbiased manner  Parental autonomy may be enhanced by prenatal testing-gives information which may help parents make informed decisions about the further management of the pregnancy  Conversely, it is difficult to avoid the involvement of third parties (e.g. health professionals) after genetic testing-their input may undermine autonomy

Beneficence  Can benefit parents by reassuring them of the health of the baby  Can benefit parents by removing uncertainty, thus reducing anxiety and allowing preparation for birth Non-maleficence  Many tests are invasive and carry significant risks  Given limited information test may give, is it possible to do more harm than good by performing prenatal testing?

Autonomy  The fetus has no say in the decision to undergo prenatal testing-it has no autonomy Beneficence  In general, information gathered from genetic testing cannot be used to change the fetus’s condition-can argue it does not benefit from testing  However, fetus may benefit if the pregnancy is managed differently in light of new information Non-maleficence  Significant to risk to fetus, including death. Harm from test may outweigh harm from POSSIBLE condition

What ethical issues are there here?

Autonomy  Parents need to be aware of ALL options available to them when the result is available, to enable to make an autonomous decision about how to proceed with the pregnancy  Parents need for their personal values and beliefs to be valued and their choice to be supported, with no bias from third parties which may influence that choice, to ensure autonomy is not undermined

Non-maleficence  Information may be an unexpected burden to parents-may have to make extremely difficult decision, on behalf of the child as well as themselves Justice  Is it selfish of parents to continue to the birth of a child with a genetic defect, in the knowledge this will put a burden on resources?  Is it selfish of parents to abort a fetus who may be an asset to society?

Beneficence  Could argue the child can be spared from suffering as a result of the information gathered from the test Non-maleficence  Conversely, the child could be knowingly subjected to a life of suffering if the parents continue the pregnancy  BUT who is to say the child cannot live a happy and satisfying life? The parents can cause harm by aborting the fetus. Further, health  Extremely controversial, subjective issue

Julie now knows she is a carrier of a Fragile X mutation  Does she have a responsibility to disclose this information to her sister?  Does she have a responsibility to disclose this information to other members of her family?  Do health care professionals have a responsibility to disclose this information to Julie’s family members?

 Parents considering undergoing prenatal genetic testing should undergo pre and post-test counselling, preferably by one trained in genetic counselling  Any decision made by the parents as a result of genetic testing should be respected by healthcare professionals and appropriate support provided as a result  Any information established as a result of genetic testing belongs to the parents-it is for them to decide whether to disclose it  In general, the same goes for autonomous individuals undergoing testing. They own the information, their confidentiality must be respected and their permission sought before any information is disclosed to third parties