After much discussion and debate along with a review into the advancing medical field in terms of genetically susceptible disease and our knowledge regarding inheritabilty probabilities and the related medical managment such as screening procedures, we feel that the rights of the adopted child have not been fully considered in the current policy. It is our opinion that the adoptees right to genetic health information must not be overlooked. Our policy amendments therefore include a mandatory provision that both birth parents be required to submit a non-identifying updated family medical history every 5 years to the Ministry that is passed on the the adopted child. This requirement would no longer be required in the cases where the adopted child is re-united with a birth parent(s). However in the event that only one birth parent agreed to contact, the other birth parent would be required to continue with the mandatory medical history updates. We understand that this inclusion involves a shift in the policy framework as well as a shift towards the idological framework of civil liberty. This policy requirement also creates a fundamental change in responsibility on the part of the birth parents who now aquire a life long obligation to their child. However, at the same time, the rights of the birth parents to privacy will continue to be protected. D.
3 comments:
I'm not sure how you can assure that the rights of birth parent privacy can be assured if every 5 years they've got someone from the government nagging them to fill out an updated medical history form.
I have a feeling that's something the privacy commissioner might have a few concerns with.
hi Natalie,
thanks for your comment on this. This was definitely something that was up for debate in our group, and we realized that our discussion around it never made it into the actual blog. It was really something that we struggled over, because in any policy development, there will be individual rights of the various groups that come up against each other in conflicting ways. As is the case with all policy development, there are many voices that need to be heard and opinions that need to be addressed, and rights that need to be considered. In this particular case, it came down to a question of the adoptees right to their biological information that could affect their health versus the birth parents right to privacy. We agree wholeheartedly with you that there are concerns about this in this particular case, however we felt that we had to include it to address the fact that there are now over 2500 genetically based medical conditions that can be mitigated through early screening, which happens in the case of a family history of that condition. We felt that the adoptee had the right to know if there was a family history of one of these genetically based conditions so that they could have access to screening the same way someone who knows their birth family does. In recognition of the fact that this is in fact a violation of the birth parents privacy, we tried to mitigate the degree to which it was violated through the condition that contact need not be made between the adoptee and birth parent for the adoptee to have access to this information. Yes, the implementation of this condition does have issues, and these issues would need to be addressed in terms of how the birth parent is reminded of the need to update information, however, ethically we just could not deny the adoptee the access to this information. I hope that this explains our conundrum around this issue within our group, and we're glad that you brought it to our attention that it hadn't been addressed in the blog. This is certainly something that we should have opened up to more discussion in the blog in terms of implementation and ethics, and we overlooked that. I suppose that this is one of the benefits of the blogging media - it encourages discussion and maintains accountability to the voices that are affected by our research in a way that is not common in academia. Thank you.
As an adult adopted person who has no contact with their birth family, I still think that making mandatory health reporting every five years makes no sense. It opens up doors for liability issues with respect to the birth parents. Moreover, even in in-tact families, parents have every right to with-hold health information from their children if they desire - why would we punish birth parents by forcing them to do so. There are also questions regarding people who did not consent for their children to be adopted. Who would confirm the information they provide is thorough and even accurate? Are we going to start requiring doctors notes?
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