DOHA, Qatar – Advances in genomics have made mapping the genome of individuals both cheap and easy, but those same advances are leading to questions about the suitability of long-held practices of data-based research and a host of concerns of how to develop ethical standards.

One question for more than 1,300 scientists, health professionals, industry stakeholders and policy makers gathered this week for the World Innovation Summit for Health (WISH) has been how to approach those challenges in terms of both traditional Western medical standards and Islamic ethics.

“Islamic ethics doesn’t mean necessarily being different. It is approaching differently, maybe, but it doesn’t always mean being different,” Mohammed Ghaly, a professor at the Research Center for Islamic Legislation and Ethics at the College of Islamic Studies in Qatar, told BioWorld Today on the sidelines of the summit.

Questions of ethics are becoming increasingly important for health stakeholders and drug developers looking to tap into the large global Muslim market. The emergence and growth of precision medicine developed from the growing universe of genetic mapping around the world is creating new opportunities to develop drugs that address individual health needs.

Genetic mapping is increasingly easy. The first genome was mapped in 2003. Less than a decade ago, it would cost more than $100 million to map the genome of one person. The same process now costs less than $1,000 and can be completed in days.

“There is tremendous promise in precision medicine,” said Victor Dzau, president of the U.S. National Academy of Medicine and one of the key authors of a new global action plan for precision medicine released Tuesday during the first day of the WISH summit. “Many countries in the world are moving forward with this initiative.

“Sequencing is easy. It is no longer a problem, Dzau added. “Everything else you need to build.”

Answers to the many ethical questions generated by the relatively new field of genomics are difficult in any setting.

In Muslim settings, however, the research itself opens a Pandora’s box of ethical questions. One example is data ownership. There is very little scholarship or literature in that area, with companies and stakeholders slowly opening the door to discussion and tentatively looking for solutions that address the concerns of patients and regulators globally while also facilitating access to markets.

“There are issues about ownership. Who owns the information?” said Ghaly. “This is a big issue. We are planning to have a conference in 2018 to discuss these issues.”

The amount of individual data that exists is growing exponentially.

The U.S. has a project underway to map the genome of 1 million people. The U.K. has the 100,000 Genomes Project, guided by Genomics England, a private company under the Department of Health. France, India, Israel, Japan, South Korea, Luxembourg, Scotland, Singapore, Sri Lanka and Thailand all have genomic projects underway. Qatar, for its part, is now working to map the genome of every single one of its 2.2 million citizens.

That is an enormous amount of data.

“Who owns this? Is it the one who donated the sample? Is it the biobank that has been working on this and generated the information? Is it the state, the ministry of health? Is it a private company that put money in this? Is it all of those people?

“In Islam, the one who owns the body is not the one who has the body,” explained Ghaly. “Your position is a trustee. Not an owner. You can do what is beneficial for the body in light of the guidelines given by the owner.

“Your position as a trustee is weaker than your position of the owner,” said Ghaly. “Dealing with the body as something sacred, as something belonging to God, will make the options much more restricted. This needs to be discussed.”

The discussion quickly moves into the realm of religious belief, but there is virtually no literature at the moment to address those concerns.

“The issue of privacy: All religious scholars say privacy must be respected, but it is not clear in the genomics context what this means,” he said. “Information generated by genomic sequencing is not conventional information. This is not the information that you get by having blood analysis. This is much more complicated.

“What do we mean by privacy and to what extent should we go for it? This is much more difficult and a much more problematic issue that should be discussed.”

A new project in Qatar to examine those very issues started in September and another large research project is looking specifically at Islamic ethics and genomics.