A Fetal Abnormality is Discovered: Anything Wrong With Full Disclosure?
I received an e-mail from a lady in Canada who wrote: “Dear Dr. Bernstein,My name is Renate Lindeman, mother of two beautiful daughters, who happen to have Down syndrome.When I was pregnant with my oldest daughter who is 3,5 years old I was offered screening because of my maternal age of 35. I was naive and declined, thinking 'I am having a baby, I feel good, why screen?'It never occured to me that selective screening and termination happened, at least not on this scale.The past 3,5 years have certainly been a journey of awareness, often a painful one.Recently, I started a petition to call upon the Canadian government to create a 'prenatal diagnosed condition awareness act' http://www.gopetition.com/online/13481.html What can I say, any suggestions, comments or support would be very much appreciated. Renate Lindeman”
Here is my support , Renate.
In the link Renate noted above, she explains the current situation in Canada and elsewhere regarding the need for prenatal diagnosed condition awareness laws.
In Canada each year around 400,000 women will become pregnant and all these women will be offered some sort of screening or testing for an anomaly. As a result thens of thousands of women will be told their unborn baby may have a certain diagnosed condition. Technological advances in fetal screening are presenting parents -and doctors- with enormous ethical, psychological and social dilemmas. Vulnerable, and with limited or biased information as guidance, more than 90% of prospective parents in Canada choose termination if their baby is diagnosed prenatal with Down syndrome. They may never know there is a world of resources, hope and support out there. In spite of tireless efforts from support groups their information pamphlets rarely reach prospective parents at the time they need it most.The United States recently re-introduced the Prenatal Diagnosed Condition Awareness Act, which ensures prospective parents are supplied with balanced information about the diagnosed condition and educational programs for health care providers are established. The U.K. is making great strides in establishing public awareness campaigns about diagnosed conditions. In Canada an expansion of screening programs is not accompanied by an appropriate expansion of awareness and educational programs.The Nova Scotia Down Syndrome Society believes that non-directive and balanced information about all options should be at the heart of prenatal screening.The Nova Scotia Down Syndrome Society joined by the Candian Down Syndrome Society (www.cdss.ca), believe there is an urgent need for an Prenatal Diagnosed Conditions Awareness Act and that the provinces and territories participate or enact equivalent legislation within their jurisdictions. This Act would ensure provinces and territories responsible for health care set aside appropriate resources for the establishment of educational and awareness campaigns that will enhance knowledge about diagnosed conditions and allow organizations to create and distribute balanced and accurate information to women and prospective parents.By creating a law that manages the above, Canada will ensure that all differences are valued equally.
Similar legislation in the United States has been attempted over the past several years but has not gone anywhere. Currently pending in the House of Representative is H.R. 3112: Prenatally Diagnosed Condition Awareness Act of 2007.
The purpose is to amend the Public Health Service Act to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions. Introduced July 19 2007, the Bill has been sent to the House Energy and Commerce Committee.
I challenge my visitors to look at the current House Bill and come back and discuss the pros and cons of such legislation. The issue is that once a pre-natal diagnosis of fetal disorder is diagnosed, shouldn’t the parents be informed of the consequences of the diagnosis and given all the possible decisions which could be considered? Is there anything wrong with full disclosure? ..Maurice.
posted by Maurice Bernstein, M.D. @ 9:08:00 PM
9 comments
9 Comments:
It is my opinion that anything less than full disclosure in any life and death situation is unethical. To withhold information is to assume that you know better than the patient how they should live their life.
MJ KC, should the counselor or physician withhold the resource information about the possibility of abortion if the mother and father of the fetus do not want a fetus with the Down syndrome or other with a serious genetic abnormality to be born? ..Maurice.
To read a view which rationalizes the decision to select abortion when a Down syndrome fetus or other severe genetic abnormality is found in pre-natal screening, click on this link to Hastings Center Bioethics Forum and the article by Hilde Lindemann. ..Maurice.
If the resource information about abortion is accurate and legal, I think it is the obligation of the doctor to share that with the patient no matter what personal beliefs the doctor holds. But what a haunting decision for the parents.
I thought I wrote that full disclosure is the only ethical thing to do. Let the parents decide by disclosing everything including abortion and what kind of problems they are likely to face if the baby is allowed to be born.
It is not a decision for the doctor to make and if they do not disclose all options they are imposing their beliefs onto the parents.
We've discussed this issue off and on on MomSquawk. According to many parents in the DS community, the problem is that doctors and genetic screeners often offer only a bleak picture of what DS people can accomplish, and their input is based on outdated information. Thus parents feel subtly - or in some cases, not so subtly - encouraged to terminate.
The US bill asks that up-to-date information and resources - including referrals to DS support organizations, if desired - be provided to the parents so they can make informed decisions.
There should absolutely be just that: full disclosure, but without bias leaning in ANY direction (pro or con). I am aware that physicians are human and have their biases just like the rest of us, but it is not their place to nudge parents into making a decision either way when it comes to a potentially "bad" prenatal diagnosis.
Part of the problem here has nothing to do per se with physicians, but has to do with American culture which seems to imply that disability=bad, burdensome, costly, requiring undue amounts of "sainthood", and all sorts of other negatives. I surely don't deny that there are some types of disabilities that this may apply to to some degree or other, but it should not extend across ALL of them. Our tendency to want the "perfect" baby and our use of technology to that end is a reflection of a disturbing trend not limited to the US. I can understand how some people wouldn't be able to take on the requirements of raising a child with a disability, but I find it hard to believe that would extend across all of humanity. Encouraging the abortion of disabled (or even potentially disabled) fetuses is a form of eugenics that should be generally discouraged; not necessarily by physicians, but by an overhaul in the way we look at life. Not simple, but better than just discarding those with problems.
On its face it seems like an unobjectionable idea. But really, doctors across the country have countless conversations with patients on difficult topics every day. There's probably a lot of information people think other people should be getting in these conversations but aren't. We could ensure that every medical conversation includes "fair and balanced" information by having a law covering every single medical issue. Is it really a good idea to start legislating and micromanaging the doctor-patient relationship that way? This also occurs to me: maybe I'm just a cynic, but would politicians and certain advocacy groups really care that much about the information being provided in these conversations if it didn't involve a subject whose possible outcome is the decision to have an abortion?
Well, there are a few other issues that we physicians are required by law (at least here in California, California law) to present to patients formal (perhaps better, written) information including such as options available for the treatment of breast cancer and prostate cancer, sterilization, hysterectomy,gynecologic surgery,psychosurgery and electro-convulsive therapy. Strict informed consent must be obtained for all. So far, in the state of California, there are no formal written documentations required to be given to the patient specifically regarding abortion. Interesting, huh? ..Maurice.
Post a Comment
<< Home