Reproductive ethics and cultural sensitivity
Today’s multi-cultural society is a challenge to the health care system, especially when it comes to reproductive and sexual health. At the same time, new technology increases our reproductive choices, increasing the challenges.
We tend to think of having children as a social decision. But today, the parents to be are faced with a number of reproductive options. Instead of couples asking themselves if this is the right time to start a family they could feel pressured to make the ‘right’ reproductive choices. Amal Matar is working with the ethical issues that surround some of these choices. Her thesis project deals with reproductive ethics, and more specifically what would happen if we introduced screening couples for carrier status of autosomal genetic conditions, what is called pre-conception genetic screening, or PCS.
Tests for carrier status are more reliable and cheaper than ever. Suddenly it is becoming cost-effective to consider screening larger populations. According to Amal Matar, this comes with some ethical problems: Screening could increase reproductive choices for people and enhance their reproductive autonomy. But having choices could also cause moral distress. We also risk medicalizing a process that until the dawn of IVF was out of the reach of doctors and geneticists.
Couples and communities (like the Ashkenazi Jews) that are known to be high risk for carrying certain genetic traits have been offered this type of pre-conception testing for many years now. If both parents test positive, they are given choices either to undergo prenatal screening or pre-implantation genetic diagnosis (PGD) in connection with IVF-treatments. We often think of severe chronic conditions like beta thalassemia (where a person suffers from chronic anemia) or cystic fibrosis (where the lung alveoli are affected and person suffers from respiratory symptoms), but screening programmes could include as many as 500 disorders and conditions.
There are not only medical and genetic factors to the reproductive choices these screening programmes would imply. According to Amal Matar, these choices also depend on religious beliefs and our moral outlook. But it was only half way through her doctoral studies that she realized how important these issues actually are, and how sensitive they can be.
“Growing up in the Middle East and moving to Sweden, I realized how religious practices, cultural norms and ethical values affect how we adopt and use modern technologies, particularly in the field of reproduction”, says Amal Matar.
Her own interest in reproductive ethics came after working with research ethics for a couple of years. Moving to Sweden wasn’t a difficult choice. She had done her master thesis on research ethics, lectured and trained professionals. It was time to try something new, both in terms of ethics, but also the adventure of a new country and culture.
Amal Matar believes the Swedish health care system is aware of some of these challenges. The first time she went to see the doctor after moving here she was asked whether she wanted to see a male or female doctor, simply because she is from the Middle East. It is a fact that migrant Muslim women use health care less than the rest of the population. Offering a choice could be a way of helping women who would have avoided the health care system otherwise. Having good attitudes in health care could help, especially when it comes to reproductive and sexual health. And for a gynecological examination perhaps more important to have the choice she was offered when seeing her GP. And when it comes to counselling, these women might perhaps also prefer to talk to a woman. But why is this something we should offer?
“In health care I believe we need to, because it is lifesaving. We also want immigrants to use the health care system when they are ill, and when they need reproductive and family counselling. So that they can see trained professionals”, says Amal Matar.
In October 2015, Amal Matar arranged a workshop on Islamic perspectives on reproductive ethics in Uppsala. During the workshop she realized that culture and religion is a real challenge for health care professionals. But the fact that patients and health care professionals come from different value systems doesn’t have to be a problem, as long as we are sensitive to these issues. Understanding that there are different value systems, and respecting that fact, is important for both care and counselling. But we shouldn’t be overly sensitive. Both patients and professional need to adopt, but we also need to figure out how to understand and respect each other without imposing our own value systems on patients in care or counselling.
About Amal Matar
Amal Matar trained as a medical doctor in Cairo’s Ain Shams Medical School and has a master in biotechnology from the American University in Cairo. She worked at the Egyptian National Blood Transfusion Service for several years. Before she joined CRB she was the co-ordinator for the Middle East Research Ethics Training Initiative, an NIH funded project for healthcare professionals. She was about to go to the US to do an internship at NIH when she came across an announcement for a PhD position on reproductive ethics in Sweden. Amal Matar moved to Sweden to start her PhD in 2013 and will present her half time thesis in March 2016.
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