As IJME enters its 25th year of publication, all of us closely associated with the journal look back on this journey with a degree of satisfaction. Not only has the only bioethics journal published from India survived for 24 years, it has also produced some extraordinary successes. As you read this issue, we will be celebrating the 12th year of the biennial National Bioethics Conferences – the sixth NBC will take place in Pune from January 13 to 15, 2017.
Over the last 25 years, we have witnessed the takeover of medical journals by corporates. We have also seen journals becoming financially dependent on advertisements from corporates, and adopting commercial models for publishing. There are controversies about the erosion of editorial independence, and the increasing influence of market and corporate interests on medical and health journals. In the midst of this trend, IJME has managed to chart its own independent course and shunned commercialisation by not charging for publishing manuscripts or for access to published material. This is something extraordinary.
However, it is not just surviving that gives satisfaction, it is the fact that the journal has come to represent the growing voice of medical ethics and bioethics in India. Furthermore, this voice is becoming stronger, and is heard beyond the borders of the country.
IJME and the NBCs have played a critical role in promoting multi-disciplinary interaction and in stimulating wide strata of professionals to reflect on and, to the extent possible, act on issues related to medical ethics and bioethics.
Does that mean we have succeeded in making healthcare more ethical over the last two dozen years? Is the environment better now for the ethical practice of medicine? To what extent have we contributed to reforming the healthcare system in such a way as to make it universally accessible? Can there be justice in healthcare unless it serves all who need it?
These are troubling questions that the organisations involved in bioethics will need to confront, as well as act on, to effect change in the coming times. That requires us to not remain satisfied with our limited success but to reflect on its limitations.
The impact of bioethics work or activism is often assessed in terms of the extent to which it has made health professionals conscious about their ethical duties. Their ethics consciousness also makes them more sensitive to violations of healthcare ethics. This sensitivity is expected to result in acting for change in the self, as well as in designing ethics guidance to prevent such violations.
Thus, the first impact of bioethics activism is similar to the impact created by human rights activism: it brings into the public domain hidden and unrecognised ethics violations in healthcare. It is difficult to assess whether there is an actual increase in ethics violations or if it is a matter of better reporting. Clearly a successful campaign on ethics first makes healthcare appear more unethical than it actually is. In a way, if we look back, it may seem that the early 1990s, when we started, was somewhat better than the deterioration we see in the healthcare system today.
The extraordinary increase in the clamour of arguments and controversies on ethics is a necessary step or pre-condition for taking the movement ahead. Unless it is acknowledged that something is seriously wrong, the question as to why society should continue to tolerate it would not be asked.
If the survival of IJME and the increasing numbers of participants at the NBCs (nearly 700 attended NBC-5 in Bengaluru in December 2014) can be considered a gauge, then there is also a growing disquiet among healthcare and other professionals about the situation.
Many health professionals are looking for ways that would make it easier to practise ethical healthcare. But being personally good, compassionate and sensitive does not easily and automatically produce an environment or a system facilitating ethical practice. This throws up a larger systemic issue: is the health system organised in such a way as to provide a conducive environment to practise medicine with complete commitment and fidelity to patients? While a pre-condition for changing, or reforming, a system is that an increasing number of people must feel the need for change and demand it, the movement must gather enough strength to make a determined push to restructure the system. For this to happen, concerned healthcare professionals and the victims of unethical healthcare — the common people – must forge a common programme that would make the system respectful of people ‘s/patients ‘ rights, and facilitate ethical practice by healthcare professionals.
The United States is regarded as the birthplace of modern bioethics – both in terms of increasing consciousness of the subject; and in forging the distinct academic discipline with multi-disciplinary bioethicists playing a leading role. More discussion and academic research in bioethics come out of the US than anywhere else. Yet one would hesitate to describe the US health system as ethical, whether on its own strength, or in comparison with other countries, developed or under-developed, where universal access to healthcare has been made a reality.
The history of bioethics in the US teaches us that mere discussion, guidelines and academic discourse on bioethics do not on their own translate into a just and people-centric universal access healthcare system.
In India, we are at a critical juncture. We are witnessing an increasing bioethics consciousness, and we are also getting closer to the birth of bioethics as an academic discipline. IJME has contributed in both. But the critical question is: where would we like to go from here? This is the right time for reflection, to ponder over the ethical obligations of bioethics and its practitioners.
For that, IJME readers and NBC participants who want to meet their ethical obligations in healthcare may have to ask not only “How can we practise ethically?” but also “How can we contribute to a health system in India that makes it possible for all to practise ethically?”
In December 2018, the Forum for Medical Ethics Society and the Sama Resource Group for Women and Health will organise the 14th World Congress of Bioethics of the International Association of Bioethics in Delhi. The theme of this international conference is “Health for all in an unequal world: obligations of global bioethics”. This theme should provide space to ponder over the questions raised above. What are the ways in which bioethics combines the promotion of ethical conduct and practices with the promotion of ethical healthcare systems?
As if the job of making health systems conducive to ethical practices were not enough, another factor may impinge on the very meaning of the terms we know and recognise as “ethics” and “change”. This is the challenge thrown up by the era of “post-truth” to philosophy and political morality.
The Oxford Dictionary recently announced that its word of the year for 2016 is “post-truth”. “Post-truth” is an adjective defined as “relating to or denoting circumstances in which objective facts are less influential in shaping public opinion than appeals to emotion and personal belief” (1). The dictionary also notes that the word ‘s popularity comes from the growing trend that it represents. Any possibility of a world in the grip of post-truth is a challenge not only to ethics but also to the very foundation of science. After all, science is built on objective facts, or on evidence obtained by using scientific methods. In the field of medicine and healthcare, the notion of post-truth may fly in face of the idea of evidence-based medicine. As an alarmed Kathleen Higgins writes in the journal Nature, “Scientists and philosophers should be shocked by the idea of post-truth, and they should speak up when scientific findings are ignored by those in power or treated as mere matters of faith” (2).
Post-truth also refers to lying, an issue of moral or ethical significance that is often deliberated in the ethics discourse. Ralph Keyes, whose 2004 book, The post truth era: dishonesty and deception in contemporary life popularised and provided extensive narratives on the term, wrote:
“Even though there have always been liars, lies have usually been told with hesitation, a dash of anxiety, a bit of guilt, a little shame, at least some sheepishness. Now, clever people that we are, we have come up with rationales for tampering with truth so we can dissemble guilt-free. I call it post-truth. We live in a post-truth era. Post-truthfulness exists in an ethical twilight zone. It allows us to dissemble without considering ourselves dishonest. When our behavior conflicts with our values, what we ‘re most likely to do is reconceive our values. Few of us want to think of ourselves as being unethical, let alone admit that to others, so we devise alternative approaches to morality. Think of them as alt.ethics. This term refers to ethical systems in which dissembling is considered okay, not necessarily wrong, therefore not really “dishonest” in the negative sense of the word” (3: p 12).
Commentators have noted the massive spikes in the use of the term during and after the post European Union referendum in the United Kingdom, and in the presidential elections in the US. Such systematisation of lies, with their acceptance by broad sections of society, is a phenomenon not new in history, but new in its recent acceptance and the new name it has acquired.
In the last few decades, we have also witnessed the rise of the phenomenon of post-truth in India. Appeals to emotions, sectarian religious identities, and mobilisation to neutralise “others” acquired a systematic form in the latter part of the 1980s, to escalate in the 1990s and thereafter. Now politically dominant, this phenomenon is likely to throw up major challenges for ethics as well as science.
Modern bioethics, as it emerged in the 1950s and ’60s, is not premised on irrationality and values that are sectarian. It is a discipline to protect humanity and the environment from the callousness of the unbridled and harmful quest for profit, the use of science to the detriment of people — as participants in scientific research as well as its users — and from the cultural domination of one segment of people over others who are weak and vulnerable. Modern ethics, therefore, promotes a scientific temper, as policies and practices not based on scientific evidence are brought up for ethical deliberation and action.
We need to note that the birth of IJME in 1993 took place at a time when this era of post-truth sought to find public acceptance. In retrospect, perhaps it emerged to counter the influence of as well as the reaction to post-truth. Ethics, by emphasising values, attracted some who were influenced by the appeal of post-truth rhetoric about new values, and they wanted to mainstream them. It was also a reaction because of the immense potential of such new values to undermine science and desensitise its practitioners from the plight of vulnerable people such as the poor, the lower castes and the minorities.
This only makes the challenge of the future more complex and formidable. Bioethics will not only have to impact individual practitioners and the healthcare system within which they work, it will also have to struggle to keep alive its premise of scientific rationality, human rights and humanitarianism.