A panel jointly organized by World Innovative Summit for Health (WISH) and Center for Islamic Legislation & Ethics (CILE)
As part of its 2015 summit held in Doha, Qatar on 17-18 February 2015, CILE and WISH jointly organized a panel on "Healthcare and Ethics: Genomics" on 17 February 2015, 14:00-15:30. This was the second consecutive panel under the broad title "Healthcare and Ethics". The first panel last year focused on end of life issues, especially palliative care. The panel this year addressed another key-issue in bioethics, namely genomics, which has become a hot topic in the Gulf region, but particularly in Qatar.
The panel was moderated by Mohammed Ghaly (CILE academic director and professor of Islam and Biomedical Ethics). The panelists included the following
- C. Thomas Caskey (Baylor College of Medicine, U.S.A.)
- Asma Al-Thani (Qatar University, Qatar)
- Hilal Lashuel (Qatar Biomedical Research Institute, Qatar)
- Eman Sadoun (Supreme Council of Health, Qatar)
- Mohammad Naim Yasin (Faculty of Sharia, Jordan University, Jordan)
- Tariq Ramadan (Center for Islamic Legislation & Ethics (CILE), Qatar and University of Oxford, UK).
Main Themes and Questions
In 2003, the former American president, Bill Clinton, declared the completion of the Human Genome Project a success. It was "big" news, claiming that "Science" in general and "biomedical sciences " in particular after this great achievement will never be the same as before. The achievement was compared to the Apollo program, which managed to bring humanity to the moon. Thus, a new historical periodization was introduced, namely the pre-genomic era versus the post-genomic era.
Francis Collins, the director of the Human Genome Project in its final phase, described the significance of this project in his book Language of God:
The human genome consists of all the DNA of our species, the hereditary code of life. This newly revealed text was 3 billion letters long, and written in a strange and cryptographic four-letter code. Such is the amazing complexity of the information carried within each cell of the human body, that a live reading of that code at a rate of one letter per second would take thirty-one years, even if reading continued day and night. Printing these letters out in regular font size on normal bond and binding them all together would result in a tower the height of the Washington Monument.
Mapping the human genome produced a huge amount of information about human biology to the extent that it has been characterized by the term "Book of Life". As Collins himself conceded, the problem with this book is that, "It is as if we have discovered the Book of Life, only to find the book is written in an unknown language." Thus, scientists are still busy with deciphering the language of this book and this deciphering process is not always as easy as we may sometimes think. During the panel, Dr. Thomas Caskey elaborated upon this issue.
A Decade of Initiatives in the Gulf Region
Since 2003 (the year in which the Human genome project came to a successful end), the Gulf region developed a series of genomic initiatives:
· In 2003, the Centre for Arab Genomic Studies was established in Dubai, in the United Arab Emirates by the Sheikh Hamdan Bin Rashid Al Maktoum Award for Medical Sciences.
· In December 2013, during the previous WISH conference (held in December 2013), the Qatar Genome Project (QGP) was launched by HH Sheikha Moza Bint Nasser in her inaugural speech of the conference.
· In December 2013, the Saudi Genome project was also launched with a three-year budget of SAR300 Million
What is striking about these initiatives is that they were not satisfied with importing technology (in this case genomic technology) but expressed genuine interest in actively participating with the view to be pioneers in the field.
Two of the panelists (Dr. Asma al-Thani and Dr. Hilal Lashuel) who are engaged into the Qatar Genome Project (QGP) gave more detailed analysis of the Qatar Genome Project.
Ethical Challenges
In the midst of these scientific ambitions and the promising potentials in the fields of healthcare and personalized medicine, one cannot ignore the ethical challenges and questions raised by the edge-cutting technologies of genomics.
To demonstrate the significance of addressing such ethical challenges, it may be sufficient to mention that, parallel to the Human Genome Project (HGP) and as integral part of the project, a large-scale program was established to examine the relevant ethical questions, under the title Ethical, Legal and Social Implications, known as the ELSI program. This may be the first time in the history of bioethics that the ethical challenges of scientific ventures would be address concurrently with the scientific enterprise rather than afterwards, as was usually the case before. The HGP example in conflating genomics with ethics has now become the norm for subsequent research projects conducted elsewhere around the world.
To get an impression about the bulk and scope of the ethical challenges/questions raised by genomics, it is noteworthy that the ELSI program in the US during the period 1990-2012, funded about 500 research and education projects and conferences. This has resulted in more than 1,500 peer-reviewed journal articles, books, newsletters, websites and television and radio programs.
Despite the usefulness of the scholarly output of the ELSI programs in the US and elsewhere and their in-depth and rigorous analysis of core ethical issues in the field of genomics, religion has not been a focal issue. Indeed, the very word "religion" does not appear in the title of any of these programs and publications. When it comes to Islam in particular, we can say that there is almost nothing there.
The situation in the Gulf region is quite different, however, because religion (particularly Islam) usually plays a significant role in society and thus has been taken seriously when the ethical challenges of genomics have been addressed. For instance, paternity is a central issue in the Islamic tradition and in Muslim societies. What should biomedical institutions responsible for the genome sequencing projects do with the so-called "side-results" that have bearing on paternity issues, e.g. showing that child X is not biologically related to Man Z? How do Muslim religious scholars think about such issues? Are these institutions (ethically) obliged to reveal their results to the persons involved; or to the contrary, should they not be allowed to do so? How far should/would national legislation on genomics in the Gulf countries take into consideration the ethical dimensions? More broadly speaking, how does the particularity of the Arab/Muslim context make genomic research and medicine different to the Western context? These questions were addressed by three panelists: Dr. Eman Sadoun, Shaykh Mohammad Naim Yasin, and Dr. Tariq Ramadan.
External links
Video of the panel, credit WISH
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