There is a high-profile case currently making news in Canada involving a Jehovah's Witnesses family whose three infants were seized by the government of British Columbia so that they could be given potentially life saving blood transfusions. The babies are three of four surviving sextuplets born in early January. The case raises a number of issues, including the limits to religious freedoms, the obligations of parents and the state, and the right to refuse medical treatment.
It is my opinion that the BC government acted appropriately and with complete justification; they were forced to act a) as a result of the parents' gross negligence -- religiously influenced or otherwise, and b) on behalf of the infants who were in need of state protection.
At a peripheral level, the issue is of significance to the therapy versus enhancement debate. Given changing conceptions of normal human functioning and health, it is an open question as to whether future interventions (such as the elimination of genetic disorders) should become mandatory, or if parents should be given the option to refuse treatment.
Before I get into my analysis, however, here is a run-down of what has transpired in BC thus far:
Canada's first sextuplets were born in early January and that was in and of itself big news. The babies, four boys and two girls, were delivered after only 25 to 26 weeks of gestation -- one naturally and the rest via Caesarean -- and each weighed less than 2 pounds each.
They were smaller than an adult hand and were immediately placed in intensive care where they were listed under fair condition. Their vital signs were stable and within normal limits, but because they were born so premature, they were initially given an 80% probability of surviving. Preemies have underdeveloped organs and immune systems which make them more vulnerable to infection.
One baby died days after birth, and then another in the following weeks. The surviving four babies were clinging to life.
The sextuplets were born to Jehovah's Witnesses, a Protestant Christian sect that forbids blood transfusions and organ transplants. It is not uncommon for preemies to undergo blood transfusions; they tend to suffer from low hemoglobin and experience blood loss as a consequence of frequent blood tests.
Instead, the parents insisted on alternative measures including careful attention to minimal blood sampling, clinical acceptance of lower hemoglobin levels, use of erythropoietin and iron to stimulate natural production of red blood cells and other medical procedures.
Concerned about the surviving infants, the provincial government began to scramble and mobilize for more drastic action. On 29-January, under Section 29 of the "Child, Family and Community Service Act," and with the support of the Supreme Court, the government took temporary custody of one infant to allow for what was deemed an essential blood transfusion.
On the next day the Ministry of Children and Family Development asked the parents for permission to perform a blood transfusion on a second infant, but they received no response. The second child was taken into protective custody and given a blood transfusion. According to the father, he "could not bear to be at the hospital when they were violating [his] little girl." He complained that it was unfair of the ministry to label them as unfit because they "choose alternative medical treatments to blood transfusions."
Eventually the third baby was taken to the hospital, with the fourth remaining under the parents' guardianship. The Vancouver parents are now in a legal battle with the province, claiming the government violated their religious freedoms.
This case is an excellent example of why there needs to be a clear delineation between the church and state. Religious injunctions often contribute to poor and ill informed decisions. The state, on the other hand, can remain impartial and perform due diligence on matters of religious consequence. It is for this reason that I have also argued for the separation of church and bioethics.
The parents, who are clearly very happy to be parents and who claim to be looking out for their children's best interests, are refusing to allow treatment on nonsensical grounds. Scriptural or aesthetic justifications that inhibit life saving interventions are arbitrary and negligent at best (I say arbitrary because the mother utilized fertility treatments to help her get pregnant).
In our liberal democracies, the right to practice religion is largely a policy of tolerance. Citizens are given the benefit of the doubt in free societies to worship as they see fit. But it is a freedom that is endured so long as the social contract is maintained. One cannot break the law and decry that their religious freedoms have been violated. It is for this very reason, for example, that Sharia law will not be introduced in Canada despite pressure to do so.
The BC government did what they needed to do. Moreover, it is their responsibility to intervene in cases such as these. This is why we have governments. The parents made an extremely poor and dangerous decision on behalf of their children who were in no position to offer protest or defend themselves.
But where do we draw the line? Is it merely life saving interventions that need to be enforced? Will enhancement technologies change this situation?
Like blood transfusions, future technologies will change expectations about what can and should be done. Access to genetic technologies, for example, may one day result in mandatory therapies that eliminate genetic disorders. This practice may become so standard and accepted that failure to do so may eventually be considered abusive.
There's the further risk that children born with preventable conditions will sue their parents for failing to intervene when they could have done so.
Consequently, the state will likely establish a minimum set of mandatory therapies. Creating such a list will not be easy, as there will forever be disagreement as to what constitutes a 'disorder' and how to discern the line between therapy and enhancement. This will become all the more complicated when traits that come about via enhancement start to normalize to the point where the absence of such endowments prevent an individual from partaking in society in the same way that the lack of an education and illiteracy does today.
These are not easy decisions, but neither is the choice to become a parent. Prospective parents must realize that the decision to have children comes with a requisite set of obligations. They need to ensure as is most reasonably possible that their children be given all the benefits that health technologies can bring so that they may live healthy, full, and open-ended lives.
The right to decline treatment
This case also raises the issue of the 'right' to decline treatment. The Jehovah's Witnesses parents, who were acting on behalf of their infants, claimed not only that their religious freedoms had been violated, but that they were unjustifiably prevented from using alternative therapies.
There are two things to consider here.
First, with two babies already dead and another 4 clinging to life, the decision to seize the children and force blood transfusions was not made lightly. The doctors chose to err on the side of caution as failure to act could have resulted in their deaths. Severe cases are not a time to experiment with alternative therapies. Moreover, aside from hurt religious sensibilities, the blood transfusions did not cause any harm.
The second issue is more complex as it deals with informed consent and the right to refuse treatment. As a supporter of voluntary euthanasia and alternative medicines, I believe that citizens deserve the right to manage their health in the best way they see fit (self-injury is a related issue, but one that falls outside the bounds of this particular post). Consequently, an adult Jehovah's Witness has the right to refuse a blood transfusion -- even if it is a foolish decision.
As for children, society is set-up such that parents make critical decisions on their behalf until they reach the age of consent. In this sense, children are a special class of citizens. They don't have the full spectrum of privileges that adults have -- for example they cannot vote or drink alcohol.
At the same time children also have special protections. The state, in conjunction with children's aid societies, are within their bounds to take a child into protective custody when the parents have been declared unfit. Parents have the authority to make decisions for their kids by default, but that privilege can be taken away from them when necessary.
In the case of the BC sextuplets, the decision to withhold treatment was tantamount to negligence and even abuse. Had the babies died as a consequence of insufficient treatment, the province would have been within their bounds to charge the parents with child abuse causing death and possibly even homicide. The rationale behind the parents' inaction makes no difference, whether it be instigated by religion, mental illness, or alcohol.
I am certain that the parents' decision to withhold treatment was an extremely difficult one and that this is a very trying time for them. It may take some time before they achieve any sense of normalcy again. They will have deal with the fact that their children were given blood transfusions and move on. I certainly hope that they will not look at their infants as being any less special. Moreover, I hope that their community will not shun them out like they have done to others in similar cases.
I also hope that when all is said and done that the parents will look back one day and be grateful that action was taken to save the lives of their children.