UNESCO’s World Bioethics Day is celebrated for the fourth time on 19th of October 2019. We laugh at every imaginable thing having its own Day – we just enjoyed the National Cinnamon Roll day in Finland (which we stole from the Swedes). However it does provide a good excuse. To share a fresh cinnamon roll with someone special, or to spend a minute thinking of bioethics.
Many aspects of bioethics are deep in the foundations of a drug development company such as Herantis. The ethical principles of clinical development, known as the Declaration of Helsinki, are one of the cornerstones of our work. For instance, in clinical studies:
- The rights of the study subject (often a patient) always come first, before any scientific or other purposes
- Any risks must be minimized
- Vulnerable subjects (children and people who cannot make a fully informed decision on their own treatment options) should only be involved in clinical studies if there’s a strong justification
- Participation in clinical studies is voluntary and based on a fully objective and thorough understanding of risks and other implications. Subjects can also withdraw from a clinical study at any time without providing any reason.
While these seem quite obvious in today’s Western sense of ethics, they can be challenging. For instance, clinical studies in patients who are unconscious need special attention; they can hardly make an informed decision. And what’s the difference between ‘vulnerable’ and ‘desperate’ if a patient does not have any hope, as considered in an earlier blogging? What is the best choice anyway for a given individual – should that be decided by the patient or by an independent ethics review board? Sometimes patients even lie to be admitted in a clinical study.
This is however just a scratch on the surface of Bioethics.
The next layer could be considered Medical Ethics: the ethical considerations in all medical practice, as opposed to just clinical studies. This broadens the scope from the individual patients, and their rights to make their own decisions and receive treatments that intend to benefit them, to general equality. How to distribute the scarce resources of a hospital in equal benefit of all patients? Should an overdosed drug addict be treated before a baby with pneumonia? How to decide if the national cancer center or the national brain center deserves more funding?
Tough questions for our smart politicians. Bioethics, however, goes even way deeper. And it’s not just about preventing biological weapons. Depending on your own health, your religious views, and your own view of the world you will have very different opinions on some of the core bioethics questions:
- When does life begin? Where does it end? If we have the right to control our life and treatments, do we also have the right on ending them?
- What are the ethical boundaries of editing the human genome? Is it acceptable to cure a serious disease by modifying a defect gene? How serious?
- Is it acceptable to test the fetus for a serious genetic defect to consider abortion? Or modify the germline to ‘cure’ the genetic defect, to not pass it to children? What is considered serious? Defect that causes death, or a severe disability, or a significant inconvenience?
- For what purposes should we edit the genome of other organisms? Is it ethical to fight poverty and hunger by genetically modified wheat or soy that survive droughts and have increased yields? Do we understand all long-term implications?
- What rights do animals have? Are all animals equal or should it depend on their intelligence? So should a chimpanzee have human rights if it is smarter than the dumbest human on earth?
- With genetic and tissue data cumulating in biobanks, what kinds of analysis are ethically justified? Is it ok that someone can be identified as a biological parent based on genetic data that others, such as that person’s siblings, submitted in a public database? Is it ok to identify criminals using that approach? Is it ok to collect genetic samples of convicted criminals the same way they are fingerprinted?
- How to cope with and accept the different views to bioethics coming from different cultural or religious backgrounds when dealing with issues having a global impact?
As you can see this is a very broad, very challenging field. Definitely worth a day of its own – if only to help someone stop to think for a moment. If only to provide politicians with some food for thought.
Maybe, however, the World Bioethics Day could coincide with the National Cinnamon Roll day. These are tough enough questions to be discussed over a fresh, warm cinnamon roll.
The author takes ethics very seriously, and bakes his own cinnamon rolls on National Cinnamon Roll day (though he admits the idea was stolen from Sweden).