Epigenetics and Blaming Pregnant Women: Hasty Conclusions, Control, and Simplified Burden of Responsibility
In a recent (13.8.2014) article in Nature , Sarah S. Richardson and colleagues maintain that careless discussion of epigenetic research on how early life affects health across generations could harm women.
Authors discuss the extensive history of placing the burden of responsibility of a child’s health on the lifestyle of the pregnant mother – and the means for controlling women’s behavior. Authors describe how, for example, evidence of any fetal harm easily lead to zero-tolerance regulatory frameworks and severe informal and formal consequences (e.g. social condemnation for an occasional sip of alcohol despite the ambiguous evidence that very moderate and occasional drinking should harm the fetus), and how the “lack of emotional warmth” of the “refrigerator mothers ” was considered to be the reason to child autism as late as the 1970s. Going even more backwards in the history, various defects were attributed, for example, to the company the mother kept during pregnancy.
Originally posted on the OUP blog. Reposted with the permission of the author
Tony Hope is a Uehiro fellow, Emeritus Professor of Medical Ethics at the University of Oxford and the author of Medical Ethics: A Very Short Introduction.
Science and morality are often seen as poles apart. Doesn’t science deal with facts, and morality with, well, opinions? Isn’t science about empirical evidence, and morality about philosophy? In my view this is wrong. Science and morality are neighbours. Both are rational enterprises. Both require a combination of conceptual analysis, and empirical evidence. Many, perhaps most moral disagreements hinge on disagreements over evidence and facts, rather than disagreements over moral principle.
Consider the recent child euthanasia law in Belgium that allows a child to be killed – as a mercy killing – if: (a) the child has a serious and incurable condition with death expected to occur within a brief period; (b) the child is experiencing constant and unbearable suffering; (c) the child requests the euthanasia and has the capacity of discernment – the capacity to understand what he or she is requesting; and, (d) the parents agree to the child’s request for euthanasia. The law excludes children with psychiatric disorders. No one other than the child can make the request.
Is this law immoral?
The newspapers today are full of the horrifying story of three children who were found dead in their family home in South London on Tuesday. The children had all apparently been diagnosed with a severe genetic disorder (spinal muscular atrophy), that was likely to lead to death in early childhood. Their mother has today been charged with their murder.
There are relatively few details available at this stage, and doubtless more will emerge over coming days and months. It would be premature to comment on the specific circumstances of the case (and the family has asked the public and media to refrain from speculation). However, it is likely that as those details do emerge that commentary on the case will take up one of two themes. Some commentators will point to the enormous strain of caring for severely disabled and terminally ill children, and perhaps bemoan the lack of available supportive services. Others (perhaps with disability or with personal experience of caring for the disabled) will react with horror at the idea of a parent killing their child, and reject any attempt to use child disability as a form of excuse for the crime. Continue reading
Neurofeedback works like this: you are hooked up to instruments that measure your brain activity (usually via electroencephalography or functional magnetic resonance imaging) and feed it back to you via auditory or visual feedback. The feedback represents the brain activity, and gives you a chance to modulate it, much as you might modulate the movements of your hand given visual or haptic feedback about its activity. What is interesting about the use of neurofeedback is it appears to train people to exercise some control over brain activity related to cognitive and mood-related processes. In other words, neurofeedback might potentially allow agents to modify the activity in their brains such that mood, attentional capacity, and other mental functions improve. Continue reading
There are reports in the press this week that the remains of 86 unborn fetuses were kept in a UK hospital mortuary for months or even years longer than they should have been. The majority were fetuses less than 12 weeks gestation. According to the report, this arose because of administrative error and a failure to obtain the necessary permissions for cremation.
The hospital has publicly apologized, and set up an enquiry into the error. They are planning to cremate the remaining fetuses. However, they have decided not to contact all of the families and women whose fetal remains were kept on the basis that this would likely cause a greater amount of distress.
Is this the right approach? Guidelines and teaching in medical schools encourage health-care professionals and institutions to own up to their errors and disclose them to patients. Is it justifiable then to not reveal errors on the grounds that this would be too upsetting? How much transparency is desirable in healthcare?
The Guardian newspaper has today launched a campaign to end female genital mutilation (FGM). This coincides with evidence that, despite being illegal, a significant number of young women from the UK undergo the practice. Globally, more than 125 million living women have had some form of FGM performed.
Imagine that when you woke up this morning, you found yourself lying next to an unconscious stranger. The stranger has a rare life-threatening illness, and unbeknownst to you he was plugged in to your organs during the night. You are now stuck to the stranger. If you disconnect the life support he will die. If, though, you remain connected to him for most of the next year his illness will have recovered, and he can safely ben unplugged. What should you do? Are you obliged to stay attached to the stranger? It might be generous of you to give up your body, and good if you choose to do so, but should we require you to remain connected?
Last week the upper house of the Belgian Federal Parliament voted (50 to 17) that euthanasia should be legal for children suffering from a terminal illness that is causing severe physical pain.  The bill legalizing the practice requires that the child understand what euthanasia is, and that parents provide their written consent. Unlike the Netherlands, which allows euthanasia for children over the age of 12, there will be no minimum age in Belgium. (Find the story here, here, here, and here.)
The passing of this bill, which has yet to be turned into a law , has been met with severe criticism in Belgium and abroad, mostly from religious and conservative groups. From what I have read, there are three main lines of argument against allowing euthanasia for children. The first maintains that allowing euthanasia for children is the first in a long series of steps that will lead to some Third Reich-like eugenics program. The second maintains that children do not have the capacity to make a decision to be euthanized. The third maintains that the legalization of euthanasia for children would lead to parents or health care professionals putting pressure on children to opt for that choice. I believe that each of these arguments fails to demonstrate that the bill should not pass, and will spend the remainder of this post explaining why.
On the evening of Thursday 28 December, Prof. Justin Oakley, Deputy Director of the Centre for Human Bioethics at Monash University, gave a fascinating and suggestive lecture on whether there is reason for the state to broaden access to IVF treatment for childless people as well as facilitating adoption. Continue reading