Rise & decline of bioethics libraries

Libraries played an important role in the emergence of bioethics in Australia. They made difficult-to-access resources available and provided a space for discussion and debate. Over the past decade these bioethics libraries have either been enfolded into larger institutional collections or moth-balled as a legacy of a previous generation.

The rise and decline of these libraries says something about the changing nature of bioethics, but also the way information is collected, accessed, and distributed.

While there are a number of examples of these libraries across Australia, I will mention two here: the Tom Ludowici Bioethics Collection at the Sydney Adventist Hospital and the Queensland Bioethics Centre at the Mater Hospital Brisbane.

Tom Ludowici Bioethics Collection, Sydney Adventist Hospital

Perhaps the biggest surprise of my research so far has been what is now known as the Tom Ludowici Bioethics Collection at the Sydney Adventist Hospital in Wahroonga, Sydney.

Tom Ludowici Bioethics Collection

The library boasts over 7, 500 physical bioethics books as well as numerous journal subscriptions and conference proceedings. By contrast the University of Sydney has 5, 518 bioethics books or ebooks (the latter making up a significant proportion of the total number).

I was surprised to discover this library because I studied and taught bioethics in Sydney and spent my teen years not too far from this hospital. Yet I never heard of this extraordinary bioethics library.

I stumbled on the collection via Trove. Whenever I would search for an early bioethics document Avondale College Library, which now houses the library, was almost always among the libraries listed as holding a copy.

In 1987, Dr Bert Clifford (CEO of the Sydney Adventist Hospital 1968-1990) established the Centre for Christian Ethics along with Dr Tom Ludowici (Senior Chaplain). In their proposal to the Sydney Adventist Hospital board they listed the Resource Library as the first of six activities, with the aim of developing ‘an outstanding collection of bioethical books, periodicals, audio and visual materials and other research resources’. They proposed an initial budget of $8000 to purchase books. On a recent visit I spoke with Michael Rigby (head librarian) who said he still has a budget line for purchasing bioethics books.

The collection continues to grow, but who uses it?

Queensland Bioethics Centre

The Queensland Bioethics Centre was established in 1981 by the Archdiocese of Brisbane. Its role was to be a ‘point of contact for Catholic Hospitals, Doctors, Nurses or others who wish refer to medico moral matters for research and discussion.’ A key part of this role was the library.

QBE 18 Clarence

18 Clarence St, South Brisbane. A cottage next to the Mater.

In establishing the library, Sr Regis Mary Dunne, the founding director, sought advice from the Hastings Center (New York) and Kennedy Centre (Georgetown) about texts to purchase and method of cataloging.*

Unlike academic bioethics centres such as at Monash University, the QBC was explicitly focused at the lay public and medical staff. While the library was for research, it was research in the sense of individual and community groups trying to educate themselves about current bioethical issues.

QBE

The QBC’s location in South Brisbane.

Furthermore, the QBC library was setup as a place for communal inquiry and discussion. In an interview with Sr Regis Mary Dunne, she recalled the importance of the location in South Brisbane. Not only was it near the hospital, but during the 1980s this was an area occupied by the working-poor, sex-workers, Aboriginal communities, and drug-users – many of the groups marginalised in Bjelke-Petersen’s Queensland.

The QBC was able to function as a resource and meeting-place for these diverse communities and would run workshops on AIDS, Human Reproductive Technologies, and other topics. They also ran a “Women’s Bioethics Study Group” and offered personal counseling.

By the mid-1990s the centre had over 6000 books, plus 20,000 articles organised by topic in manila folders.

Changing needs and roles

These libraries continue to exist, but in different locations and serving different roles. One of the major factors behind these changes has been the rise of the internet and availability of information online. However, the changing roles of these libraries cannot be reduced to the internet. Institutional arrangements also altered.

Since the mid-1990s the Mater was questioning the viability of the QBC occupying its cottage. One of the main sticking points was that the cottage needed repairs to comply with Mater OH&S requirements. Neither the Archdiocese or the Mater seemed wiling or able to afford these repairs. In November 2007 the QBC moved from the cottage in South Brisbane to the leafy suburb Ashgrove, where it was located in St Finbarr’s Church. The library continued but no longer in an easily accessible location for medical staff or the wider community.

In 2018 the QBC moved again to become part of the Australian Catholic University (ACU), Banyo. This move brought the centre into context of higher education and research. This is quite different from its initial focus on the lay community and medical staff. In terms of the library, this move has meant the bioethics library has been enfolded into the ACU library at Brisbane. This means that access, particularly to online journals, is limited to those with library card and login privileges.

In the case of the Tom Ludowici Collection, it remains a separate bioethics library. However, it is now part of  Avondale College. Further, the bioethics library used to be housed in a location between the hospital and the carpark, which was convenient for doctors and medical staff to drop by to-and-from work. It is now physically located on the other side of the hospital, which has reduced the number of hospital staff using the library.

SAN

So what?

At the start I said the rise and decline of these libraries says something about the changing nature of bioethics, but also the way information is collected, accessed, and distributed.

I need to think about this further, but my initial response would be that the internet has obviously changed the way people access bioethical information and also find communities to discuss ideas with. Libraries were not only about providing access to resources, but communities with which to debate and interpret these resources and their relation to specific medical and moral issues of the day. The internet has supplanted this role, but as mentioned I don’t think these changes can simply be reduced to the internet.

I think there has also been a shift in the bioethical issues facing communities today. In the 1980s HIV/AIDS and reproductive medicine were unknown and, for many people, frightening developments. This created an imperative to seek out information and reliable people to discuss it with.

Today, it is arguable that there aren’t equivalent issues that are as widespread or novel. For example, commercial surrogacy or stem cell therapies raise a number of medical and moral questions, yet they tend to be technical and applicable to a small section of society. Of course, debate continues over “big issues” such as abortion and euthanasia laws, and fora for community-based discussion do pop-up from time-to-time, but nothing as lasting as a centre with a library and staff to instigate and facilitate discussion.

Anyway, I need to think more about all of this, and also the sociopolitical role of libraries outside of formal educational settings.

 

 

*Both the QBC and the Tom Ludowici collection adopted the the idiosyncratic Georgetown classification system.

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IVF and the Birth of Bioethics in Australia

In the four decades since the birth of the ‘test-tube’ baby, the field of bioethics has been at the forefront of trying to understand what advancing biotechnologies mean for society, writes Alfred Deakin Institute researcher, Dr Christopher Mayes.

July 25, 2018 marked 40 years since the first baby was born via in vitro fertilisation (IVF), signalling a radical shift in human reproduction. The birth of Louise Brown in Oldham General Hospital, England in 1978 realised the technological capacity to fertilize a human egg outside of the body, opening new possibilities as well as provoking anxieties.

While the medical research team in England achieved the world-first live IVF birth, a team of researchers from Royal Women’s Hospital, Monash University and Queen Victoria Hospital in Melbourne were in close competition. Under the direction of Carl Wood and Alan Trounson, these Melbourne-based researchers achieved the world’s first IVF pregnancy in 1973 and the birth of the third IVF baby in 1980.

Since these dramatic early developments, IVF has become a relatively routine procedure. But it wasn’t just babies being born through the development of IVF; the technology also birthed a new field that became known as ‘bioethics’.

1980s and the emergence of bioethics

IVF created the possibility of fertilising an egg with sperm outside the human body. This procedure addressed a range of infertility problems, such as blocked or damaged fallopian tubes and low sperm count or motility.

It also presented a dizzying array of new possibilities, including: creating embryos from donated sperm, ova, or both; screening embryos for genetic diseases or desired traits prior to implantation; surrogacy arrangements; experimentation on embryonic life; ectogenesis (growth of a baby in an artificial womb); freezing eggs or sperm for future use; and cloning.

The potential for IVF to radically alter reproduction as well as family formation provoked an explosion of conferences, seminars, committees and institutions that sought to address resulting ethical and legal questions.

In 1980, Monash University established the Monash Centre for Human Bioethics with Peter Singer as its founding director. Shortly after, in 1981, the Catholic Archdiocese in Brisbane created the Queensland Bioethics Centre under the directorship of Sr Regis Mary Dunne. These centres sought to educate the public and influence policy debates on the ethical and social implications of developments in biomedicine.

The legal field was also responding to the new developments. In 1982, the Attorney General of Victoria appointed Professor Louis Waller to chair a committee exploring the implications of reproductive technologies in terms of the law as well as legal ethics. This led to the Victorian parliament passing the Infertility (medical procedures) Act 1984, a world-first legislation addressing IVF.

Other states soon followed but the federal government wanted a uniform approach and, in 1985, the Family Law Council released a report titled Creating Children: A Uniform Approach to the Law and Practice of Reproductive Technology in Australia, which detailed a national approach to reproductive biotechnologies.

In 1988, the federal government established the National Bioethics Consultative Committee (NBCC) to address, among other things, surrogacy, information in relation to donated eggs and sperm, and genetic counselling. Coinciding with the release of an NBCC report advising legislation to permit surrogacy, state and federal health ministers disbanded the body. Yet some NBCC members were included on the newly-formed Australian Health Ethics Committee (1991).

During the 1980s, these committees and institutions contributed to the creation of policies and legislation designed to regulate IVF use, and the directions and limits of scientific research – especially in relation to embryos. These debates also contributed to the birth of bioethics in Australia.

Conflicts and disputes

Not everyone was happy with the way bioethics was emerging. A young Kevin Andrews, for example, used his maiden speech in federal parliament to lament that “some of the same personnel from the widely-discredited National Bioethics Consultative Committee” were included on the Australian Health Ethics Committee. And it was not just Andrews who had concerns about the new field of bioethics.

Doctors and scientists were wary of external meddling in their practice and research while Catholic theologians and ethicists were troubled by the devaluing of embryonic life, which they considered sacred. Feminists were suspicious of male-dominated committees deciding what could or could not be done to women’s bodies and the technological control of reproduction, and secular bioethicists were concerned by the real or apparent influence of the Church. Politicians, meanwhile, were worried that committees they had created were now undermining their role in creating legislation.

These concerns over bioethics and the direction of biomedical research were intimately tied to fears and hopes about future society. Were we heading towards a utopia or dystopia?

Unforeseen or ignored developments?

Although its physical and psychological burdens are not widely discussed, IVF has become standard procedure. In 2014, 12,875 babies were born via IVF in Australia. While the procedure is relatively common and largely accepted as an ethically acceptable form of reproduction, questions from the earliest debates remain.

Catholic and radical feminist commentators were the most vocal critics of the new reproductive technologies. At times these seemingly divergent perspectives overlapped, particularly in regard to concerns relating to technological and corporate control of reproduction.

Catholic leaders were primarily concerned with the moral status of embryos, whether IVF contravened “laws of nature” and the separation of the sexual act from reproduction. These concerns did not gain much traction among policymakers or laity – polls in the early 1980s revealed 67% of Catholics surveyed approved of the practice and that a proportionate number of Catholics were on waiting lists to access IVF.

The feminist critique of reproductive medicine drew attention to areas largely ignored by the majority of ethicists, scientists and politicians. Robyn Rowland and Renate Klein from Deakin University were leading voices in calling attention to the influence of commercial values on the motives and ethics of clinicians. In the early-1980s, Robyn Rowland argued that IVF physicians look “less altruistic as their efforts to generate profits intensify” and queried the secrecy over a new commercial enterprise developed by the early Melbourne-based researchers and Monash University.

Rowland argued that “a collaboration between research and commercial interests uses women in essentially experimental programs and asks the participants and the public to underwrite the expense so that the researchers can enter into commercial contracts for profit.”

In 2014, Monash IVF floated on the stock market for over $300 million dollars. In writing a history of IVF in Australia, John Leeton, who was part of Carl Wood’s team at Monash IVF, characterized Rowland’s criticisms as “extreme and misguided”. Yet in light of the enormous profits enjoyed by fertility clinics, as well as the distorting effect of commercial interests, Rowland’s critique remains relevant today.

The listing of companies such as Monash IVF and Virtus IVF on the stock exchange not only means that they operate at a profit for shareholders, but also have an obligation to continually seek profits and new markets.

In recent years, social egg freezing (SEF) has been regarded by commercial IVF companies as opening up new lucrative markets. While IVF primarily focuses on women and couples with infertility problems, SEF is the practice of freezing unfertilized eggs so women may use them when they have found the right partner or achieved certain career or educational goals. The practice is marketed as an “insurance policy” that allows women to put off concerns about their “biological clock”.

There is an ongoing debate about the efficacy and ethics of this practice. But one thing that’s clear is all women between puberty and menopause are now seen as potential customers. There is limited data available about who is using these services and when. Fertility clinics suggest that it is ideal for women to freeze their eggs in their 20s and early-30s. However, data from the UK Government’s independent regulator reveals that 68% of women using SEF are over 35.

The expansion of fertility clinics into SEF raises questions about the changing reality of biomedical practice – is it simply a commercial relationship where the logics of “buyer beware” operate? Or is a medical relationship where professionals have an ethical obligation to their patients?

Neither utopia nor dystopia

The commercial dimension of biomedicine rarely featured in the bioethical debates of the 1980s. But biotechnology is now a lucrative industry that’s attractive for investors.

Commercial influences on the development of IVF – and its expansion into questionable markets – should not diminish the amazing achievements 40 years ago. We have not entered the dystopia that many feared; but nor have we reached utopia.

It’s this space in-between that bioethicists continue to work in, questioning developments of biomedicine and new technologies, such as CRISPR, commercial surrogacy, personalised medicine and artificial intelligence.

 

[This was first published 7 August 2018 in Deakin University “Research News“, with editorial assistance from Reema Rattan]