Global Bioethics

An introduction

Henk ten Have

• Publisher: Routledge
• Year: 2016
• ISBN:
  9781317300816
• Edition: 1
• Topic: Economics
• Subtopic: Sustainable Development
• Index: Economics

The panorama of bioethical problems is different today. Patients travel to Thailand for fast surgery; commercial surrogate mothers in India deliver babies to parents in rich countries; organs, body parts and tissues are trafficked from East to Western Europe; physicians and nurses migrating from Africa to the U.S; thousands of children or patients with malaria, tuberculosis and AIDS are dying each day because they cannot afford effective drugs that are too expensive.

Mainstream bioethics as it has developed during the last 50 years in Western countries is evolving into a broader approach that is relevant for people across the world and is focused on new global problems. This book provides an introduction into the new field of global bioethics. Addressing these problems requires a broader vision of bioethics that not only goes beyond the current emphasis on individual autonomy, but that criticizes the social, economic and political context that is producing the problems at global level.

This book argues that global bioethics is a necessity because the social, economic and environmental effects of globalization require critical responses. Global bioethics is not a finished product that can simply be applied to solve global problems, but it is the ongoing result of interaction and exchange between local practices and global discourse. It combines recognition of differences and respect for cultural diversity with convergence towards common perspectives and shared values. The book examines the nature of global problems as well as the type of responses that are needed, in order to exemplify the substance of global bioethics. It discusses the ethical frameworks that are available for global discourse and shows how these are transformed into global governance mechanisms and practices.

1

BIOETHICS REALITY CHECK

The customs officer is carefully studying the passport:

‘Why are you visiting Israel?’

‘I’ve been invited for a bioethics conference in Zefat.’

‘A bio … what?’

Bioethics may be an unusual term but it is not difficult to explain its meaning. One can easily mention some of the issues that are widely discussed and make headlines in the newspapers and social media: cloning, organ transplantation, genetic testing, mercy killing or the right to refuse treatment. The officer looks at me now. She understands what I am talking about. She starts telling me that her father, who is rather old, is in intensive care in the major hospital in town. The family does not know exactly what is going on with him. They are suspicious because the doctors don’t provide much information. Her two brothers insist that everything will be done to keep the father alive, but she and her sister wonder whether he himself really wants to be in this situation. She is puzzled about what would be best for her father. At that moment she stamps the passport and wishes me a good conference. I have no time to tell her that bioethics nowadays is addressing many new topics. The conference is actually about the ethics of disaster relief.

The panorama of bioethics

Bioethics is confronted with a wide range of issues. Some of these have been on the agenda for a long time, but others are new. Over the last 50 years, bioethics has been concerned with the ethical analysis of abortion, euthanasia, assisted reproduction and genetic testing. These topics are also discussed in the public media. Citizens like the customs officer will easily recognize them, even if they don’t always associate them with bioethics. More recently, bioethical debate has substantially broadened. Not only are more issues coming onto the agenda, but the more traditional topics have often obtained a wider dimension due to the globalization of the world. The following examples demonstrate that bioethics today has moved beyond the concerns that traditionally dominated its agenda.

BRAIN-DEAD PREGNANCY

In November 2013 Marlise Muñoz, 33 years old, was admitted to a Texan hospital after she collapsed at home. She was diagnosed as brain dead. Her husband and family wanted her removed from life support following her previous wishes. Life support was continued, however, as she was 14 weeks’ pregnant. The physicians argued that the law in Texas prohibits withholding care from a pregnant woman so that the life of the foetus will be protected. Two months later a judge ruled that the law did not apply in this case since the patient was dead. Marlise was disconnected from life support.

Issues that concern bioethics are illustrated in this case: end-of-life treatment, definition of death, care for pregnant women, the right to life of the foetus, abortion, but also decision-making in the hospital and the relationship between ethics and law. Modern technology and science make it possible to keep people alive, even if prospects for recovery are grim. Bioethical debate has focused on the conditions for interventions, weighing the benefits and harms, and clarifying who ultimately should decide: the patient, the family or the physicians? Life support can help patients to overcome a life-threatening situation. The example of Marlise is different because she had been diagnosed as dead. In that case, the idea of treatment makes no sense; at least for her, but what about the foetus? The state has an interest in protecting unborn life; how is this weighted against the interest of the woman and her family? And if intervention is continued, the woman’s body is used to gestate the foetus. At the same time, there are cases where ‘life’ support is provided if people are dead, for example when they have donated their organs for transplantation. The case therefore raises issues about the limits of technological interventions, as well as the protection of unborn life. But there are also more fundamental queries concerning basic concepts such as life, death and the human body. Finally, it is clear these cases cannot occur everywhere. If emergency services and intensive care are not available, if transportation is deficient, if diagnostic equipment is absent, the patient would have died without medical interference, which is the situation in many poor countries. Even in countries with more resources, these cases are exceptional. But they occur from time to time because the available technology provides the possibility.

COMMERCIAL MOTHERHOOD

Rhonda and Gerry Wile in Arizona could not have children. In vitro fertilization was not an option because Rhonda’s uterus was abnormal. They went to India where a growing number of clinics and services specialize in surrogate motherhood. They now have three children conceived with Gerry’s sperm and an Indian egg donor. Two Indian women carried the pregnancies in return for $6,000 each. Surrogate motherhood has been legal in India since 2002. The surrogacy industry is growing fast with currently over 1,000 clinics. The overwhelming majority of clients come from outside the country. India has become the largest provider of babies to infertile couples in Western countries.

This case highlights the global phenomenon of medical tourism. Patients, usually from richer countries, travel to private clinics in poorer countries to receive treatment and intervention. This phenomenon has led to new debates and concerns in bioethics. It is not merely the technology as such that creates moral issues (like in the previous case) but its different use across the world. Countries such as China and France have banned surrogacy. But with the internet, citizens can obtain medical services that are not allowed in their own country. A global world raises questions about the application of a legal framework that has been the outcome of ethical debates within particular countries while other countries have different regulations or no legal framework at all. In some countries surrogacy is allowed as long as it is not commercial. Paying women to carry a child for other people produces specific ethical concerns. It is estimated that every year 10,000 foreign couples visit India for reproductive services. The majority of surrogate mothers are very poor and from marginalized communities. They are facing the risks of pregnancy without adequate benefits since most of the money paid goes to clinics and brokers. Pregnancy is outsourced to wombs for rent. It is argued that this practice leads to exploitation and depreciation of women as human incubators, within a paternalistic society that is already discriminatory and disadvantageous for women. Particularly in India, surrogates are stigmatized; they keep their surrogacy secret from their community and parents. Commercial surrogacy also changes the concept of parenthood. There can be people who provide the gametes, others who nurture the child during pregnancy, and people who raise the child after birth, possibly all in other countries. Is the commercial surrogate the mother or simply a contracted worker, reduced to a womb under continuous surveillance in order to guarantee a good product? Recently, India introduced new visa rules to limit commercial surrogacy to couples who have been married for at least two years and are living in countries that do not prohibit surrogacy. The new rules also determine that single people and gay couples can no longer use surrogacy services. The fundamental ethical issues are not addressed within these rules; instead they have led to new debates. Furthermore, it is unclear how they will be enforced in a vast continent where corruption is widespread.

TISSUE TRADE

In February 2012, police in the Ukraine searched a minibus that happened to be loaded with human bones and tissues. Documents indicated that the remains of dead Ukrainians were destined for a factory in Germany that was processing human body parts for implantation in human beings. The factory belonged to RTI Biologics, a Florida-based medical products company. Bone, teeth and other body parts illegally recovered from corpses in Ukrainian morgues were sold on the international market.

In many countries tissues such as corneas, skin, bones, teeth and heart valves are voluntarily donated after death. Like organ donation, this is an altruistic act to help other people. Donated corneas, for example, are transplanted to restore vision. Bones are used to produce paste for orthopaedic operations, and skin materials for cosmetic surgery. But tissue donation, unlike organ donation, is not well regulated. Tissue banks that receive donated materials often cooperate with for-profit processing companies. The United States is the largest producer and exporter of tissue products. Due to global interconnections, tissues can be donated in one country, processed in another, and exported to yet another. The global tissue trade is an enormous market. Each year, in the US alone, 2 million products are derived from human tissue and sold. Recycling corpses is big business. One single body is worth between $80,000 and $200,000 in tissue products. Procurement of body parts is therefore attractive. Hospitals, mortuaries, funeral homes and morgues in many countries are contracted to ‘harvest’ tissues. Families who altruistically donate tissues do not know that these tissues are processed and sold by commercial companies. In some places families are not even told that tissues are removed from the body of their loved ones. Recipients, on the other hand, are not always informed that processed tissues from a corpse are being implanted. It is often unknown to physicians where the human tissue is coming from. Not only is it impossible to assess the safety of products but lack of traceability prevents public health responses in case of infections. Experts claim that we are more careful with cereals than with human tissues since cereals have barcodes enabling recall if necessary. It has been known for decades that Tutogen, the German medical products company in the case, has been obtaining tissues from Eastern Europe. The products seized in the Ukraine were labelled ‘Made in Germany’.

DISASTER ETHICS

On Tuesday 12 January 2010, Port-au-Prince, the capital of the Republic of Haiti was struck by a catastrophic earthquake. More than 220,000 people were killed and 300,000 injured. Humanitarian aid flooded the country. Especially in the first few weeks, relief workers were confronted with a horror show. Operating rooms were not functioning and equipment was defective or missing. Because of infected limb fractures 4,000 people had amputations. Although lives have been saved, many disaster survivors are facing a difficult future in one of the poorest countries in the world.

Each year disasters occur that have a major impact on populations and countries. Everybody will remember the 2004 Indian Ocean tsunami or Hurricane Katrina in 2005. A total of 905 natural disasters were registered in 2012: hurricanes, droughts, earthquakes, volcanic eruptions and inundations. Loss of life is greatest in low-income countries. Especially in Haiti the damage was enormous. It is the poorest country in the Western hemisphere, characterized by political instability and rampant corruption. What would therefore be the best way to help the earthquake victims? Since disasters nowadays are highly visible, they immediately call for international solidarity and compassion. Images of suffering fellow human beings make disasters a paradigm case for humanitarian aid. It is ethics in action. Many foreign relief workers went to Haiti to help. During disasters ethical issues arise, such as who should be treated first. With so many injured people at the same time, difficult choices have to be made. Relief workers know what to do and how to do it, but the necessary tools are not available. They have to practise ‘improvised medicine’. Also problematic is determining what kind of treatment would be most beneficial. Amputations may save lives but what will be the long-term quality of life when there are no rehabilitation centres, orthopaedic devices and adequate infrastructure? The relief workers return home but the injured and traumatized stay behind. Years later, many of them continue to live in precarious conditions. Humanitarian assistance can also generate negative phenomena. For example, many children in Haiti became orphans and were in bad circumstances. International adoption agencies came to their rescue. Adoption procedures were expedited. But there were also scandals of abduction since normal safeguards for protecting children were removed. Another example that good humanitarian intentions may have bad consequences was the cholera outbreak a few months after the earthquake, which killed thousands of Haitians over the following two years. The source of the outbreak was United Nations peacekeepers from Nepal who brought a virulent strain of cholera from Southeast Asia into Haiti, a country that had never before had a cholera outbreak.

GENE HUNTING

‘Three centuries ago they came for sandalwood. Today the bastards are after our genes!’ The Director of the Tonga Human Rights and Democracy Movement did not mince his words during the Australasian Bioethics Association Conference in 2001. A few months earlier, Autogen, an Australian biotechnology company, had announced a deal with the Ministry of Health of Tonga, a small kingdom of 170 islands in the South Pacific. The agreement, brokered in secrecy, would give Autogen the right to collect genetic materials and create a genetic database, in return for annual research funding and royalties. Tonga’s population is relatively homogeneous and isolated, and therefore attractive for identifying genetic patterns of common diseases. In the kingdom itself, the announcement produced public outcry. The population had not been informed or consulted. But making human biological materials into commercial property was also against the indigenous belief that human blood and genes are sanctified as owned by God. There were fears that in a small community such as Tonga, genetic information would be readily known. Genetically affected individuals would therefore have difficulties with employment, insurance, bank loans and even marriage.

Tonga, like other Pacific nations has a real health problem. More and more people are affected by diabetes and obesity. Research could help to find causes, cures and preventive strategies. For these reasons, Autogen did not anticipate opposition. They relied on the existing autocratic mechanisms of politics rather than public discussion. When the deal became known, churches and pro-democracy groups argued that collecting genes is disrespectful of indigenous traditions. Obtaining materials after individual informed consent does not take into account the extended family structure in Tonga. They also argued that prospecting genetic materials that are part of God’s creation are a form of bio-piracy. Furthermore, the benefits promised were insignificant and only available if, in the future, products can be marketed. Because of the opposition, the project was dropped later in 2001.

An expanding agenda

Textbooks about bioethics will immediately clarify its subjects. They are arranged from before birth (abortion), reproduction (IVF, surrogate motherhood, prenatal screening), genetics (genetic screening, gene therapy), to death (killing and letting die, brain death, advance directives). There are usually some issues between the beginning and the end of life, such as resource allocation, medical research and organ donation. Most textbooks have a similar structure. Some may have a more theoretical focus but the list of relevant subjects has been more or less the same over a long period of time.

The examples in the previous paragraph show how present-day bioethics has moved beyond its traditional scope. Topics such as medical tourism, humanitarian relief, or trafficking have not previously figured on the bioethics agenda. At the same time, traditional topics continue to engage bioethical debate, as the case of Marlise Muñoz demonstrates. While admitting that there is a wider range of topics, the ‘newness’ of such topics can be contested. It is argued that phenomena such as corruption and exploitation have always existed. Vulnerability is also not a new consideration since human beings as such have always been vulnerable. Disasters have haunted humanity since its beginning. Is there really something new going on in bioethics?

Answering this question requires an examination of the history. Why did bioethics emerge during the 1960s and 1970s? Medicine has, since its origins, been connected with medical ethics. This question will be explored in the following chapters. But a quick answer refers to the progress of medical science and technology. Many of the cases that provoked debate on the ethics of medicine and healthcare were related to the use of technologies that substantially influenced human life. Renal dialysis, heart transplantation, resuscitation technologies, in vitro fertilization, prenatal diagnosis – these are all new technologies that generated debates beyond the traditional bounds of professional medical ethics. In response, bioethics emerged as a new discipline, and has been consolidated during the last 50 years. What has changed recently? The above examples have one characteristic in common: the global dimension. Medicine and healthcare have become international activities. Clinical research is outsourced to developing countries. Human tissues are trafficked across borders. Genetic information is collected in one country and processed into products in another. If surrogate motherhood is not allowed, people can find through the internet other places and opportunities to satisfy the desire to have children. However, it is not only the case that there are new subjects of ethical debate. The global dimension of present-day healthcare has also made existing ethical approaches problematic. New topics are added but the debate itself transforms. For example, the moral ideal that human bodies and their parts can only be exchanged as voluntary gifts and not as paid commodities is increasingly difficult to uphold now that they can be donated in one country and sold in another. One population may have ethical objections to using women as paid baby carriers while for others it is a justified source of income to counter poverty. Globalization has therefore expanded the agenda of bioethics, adding new subjects of ethical concern but also provides a broader scope to traditional subjects, calling into question how to assess these subjects across the world. Is there an ethical framework that can take into account the values of all populations?

A broader theoretical framework

Global bioethics implies the quest for an encompassing ethical...

Table of contents

• Cover Page
• Half Title page
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgments
• List of Acronyms
• List of Boxes
• List of Figures
• 1 Bioethics Reality Check
• 2 From Medical Ethics To Bioethics
• 3 From Bioethics To Global Bioethics
• 4 Globalization Of Bioethics
• 5 Global Bioethical Problems
• 6 Global Responses
• 7 Global Bioethical Frameworks
• 8 Sharing The World Common perspectives
• 9 Global Health Governance
• 10 Bioethics Governance
• 11 Global Practices And Bioethics
• 12 Global Bioethical Discourse
• Glossary
• Further Reading
• Index