Should euthanasia researchers declare their interests?

BY CAROLYN MOYNIHAN first published on MercatorNet 

When it comes to a moral issue like euthanasia, those who participate in the debate are going to be on one side or the other. It is improbable that medical experts, ethicists, researchers, lawyers and politicians who play a part, either by choice or duty, do not begin with a position on the matter - even if it subsequently changes.

In the normal course of events we find out. But not always, not even where it could make a material difference to the democratic process.

A parliamentary inquiry into "ending one's life in New Zealand", for example, is chaired by an MP who happens to oppose euthanasia in its various forms. Simon O'Connor, chair of the health select committee which has been given this task, has spoken against legalising it here. Can he still perform his duty as chairman impartially? Yes, if he follows the committee rules and the rules of common civility.

Questioned on this score in a Radio NZ interview, Mr O'Connor pointed out that it could just as easily have been a pro-euthanasia MP in the chair. Would that be an issue? "Well, if they were very overtly 'pro' I would ask the same question of them," replied the interviewer. "Good," said the MP.

In fact, is it not better that the views of key players in such a process are overt and widely known? Isn't it easier to hold them to an objective standard of conduct under those conditions?

'We are independent.' Really?

The question of undeclared interests came into sharper focus this week when it emerged that two publicly funded researchers testing the views of members of medical and nursing colleges and associations on whether "physician assisted dying" should be legalised in New Zealand, are members of the Voluntary Euthanasia Society.

In the case of lead researcher Dr Philippa Malpas this is not exactly a secret. It was mentioned in a news report a few months ago about another of her studies -- one suggesting that some doctors were making decisions at the end of life with the explicit intention of hastening death. Referring to places which had legalised euthanasia she declared on a television programme in 2011, "We're actually not seeing the kind of abuses that people worried about. We're not seeing the slippery slope."

Dr Malpas also recently provided an affidavit to the High Court in support of a dying woman claiming the right to physician assisted suicide.

However, an advertisement recruiting health professionals to her current survey declared:

"We are independent (that is, not funded by any organisation with a particular point of view, such as the New Zealand Voluntary Euthanasia Society or Euthanasia-Free NZ)."

Well, no, they are not funded by VES, but that is a red herring. Despite Dr Malpas and Dr Pam Oliver (there is one other) being members of the pro-euthanasia group, and despite Dr Malpas' active advocacy of "aid in dying", they are being funded by the government's Health Research Council - which is rather more disturbing. Their findings, no doubt, were intended to be presented to the parliamentary committee as "independent" and scientific.

Whether the results can be either of those things is a question now before the public, since the Care Alliance, a coalition of groups opposing euthanasia, alerted the media this week and the story aired on national television news.

The Care alliance had used the Official Information Act to obtain a copy of the study proposal and its review by the University of Auckland Human Participants Ethics Committee. It turns out that the reviewers remarked on Dr Malpas' identification in a recent newspaper article as a member of VES, noting: "Does this not have to be declared?"

Nope. The researchers replied that they were not "involved with the activities" of VES and had no "financial interests in the organisation". Ergo, no conflict of interest, no declaration. They got the go-ahead and made a point of telling survey participants, "We are independent."

But, as Care Alliance pointed out, " the correct test of a 'potential conflict of interest' is the perception of the participants, not the researchers. Was this a piece of information that would have been relevant to anyone considering whether to participate?"

To some, surely.

Full of holes

In a letter to the Auckland University ethics committee in question, Care Alliance detailed much else that was questionable in the survey, including many discrepancies between it and the original application. Among other things:

* Supplementary information purporting to inform participants about "the usual key features of assisted dying laws" consisted of a bare list of countries that had legalised or were debating euthanasia - and a link to Wikipedia!

* Non-optional questions about religious affiliation and frequency of practice. (Possible political usefulness: "Only/mainly religious people object to euthanasia, and we know that religion should have no influence on the law."?)

* A "Summary of proposed provisions and safeguards for an assisted dying law in New Zealand", called in the original application a 'New Zealand End of Life Care Act'. No bill of that name has been published, which "strongly suggests that the researchers were involved in, or were intimately aware of, the drafting" of such legislation.

* An online survey form, with no verification step to ensure that the person is an New Zealand medical professional, or any procedure to prevent multiple responses. Television reporters were able to access it.

The anti-euthanasia group says these major flaws contribute to a survey that is tendentious, "meant to lead individual health professionals and their organisations towards considering mechanisms for introducing 'physician assisted dying', rather than (in the words of Justice Collins) a prior consideration of the 'complex legal, philosophical, moral and clinical issues' involved." It wants the study scrapped.

How have the public institutions reacted?

"The Government's Health Research Council told ONE News it will now review its involvement," the television channel reported. But, "Auckland University says the researchers are independent and their views do not influence their work." They are supporting their senior lecturer no matter what, it seems.

There is a big difference, I contend, between a public inquiry, with broad terms of reference, chaired by a public servant who opposes euthanasia; and a publicly funded study not open to general scrutiny, conducted by people with an undeclared commitment to legalisation, and focused on how this might be done.

Carolyn Moynihan is deputy editor of MercatorNet.

Be the first to comment, Login

Please check your e-mail for a link to activate your account.