Submissions on “Ethical, Legal and Social Issues Arising from Mitochondrial Genome Replacement Technology”

Submissions on “Ethical, Legal and Social Issues Arising from Mitochondrial Genome Replacement Technology (MGRT)”

To the Bioethics Advisory Committee (BAC),

As a woman born with a genetic disorder Osteogenesis Imperfecta, in layman’s term “brittle bone disease”, I would like to pose the following questions to BAC:

1.     Since genes can be edited, can we eliminate ALL genetic disorders? If not, how is it fair that such genetic modification is offered to mothers with mitochondrial disorders but not to mothers of other genetic disorders?

2.     Where do we draw the boundary in achieving BAC’s seemingly noble goal of “preventing suffering not only for their future children, but also for the prospective parents”?

3.     How can BAC or our government prevent the “suffering” of people with acquired disabilities in later life, whether due to accidents, illnesses or old age, if indeed having a disability is equated with suffering?

David Lang, 60 years old, has three children who were born bright and healthy. His children were discovered to suffer from Niemann-Pick disease type C, a rare genetic disorder that causes the cognitive and physical functions of the three children to degenerate. One child died at age 10 while the other two have been left paralysed, unable to talk. Together with his wife Loo Geok, 58, they soldiered on. Mr Lang, who earns less than $5,000 a month, copes financially with the help of family members and church friends and also received money and gifts from strangers. Mr Lang said that his children’s ability to smile or respond a little already gave them a lot of joy (“3 kids in family struck by rare genetic disorder”; 20 May).

https://www.straitstimes.com/singapore/3-kids-in-family-struck-by-rare-genetic-disorder

What does BAC have to say to this couple whose joy now is to see their two remaining adult children able to smile and respond a little? Is parental love conditional such that when children are not as “normal” as before, they cease to be their parents’ beloved ones?

Family members are meant to “suffer” together. The sacrificial love of a family can weather the storms of life with the help of the society at large. We build a compassionate society not by playing gods but by helping one another through life’s upheavals.

MGRT is eugenic in nature. It promotes genetic discrimination in Singapore, at a time when we celebrate the abilities of people with disabilities (PWDs). It is hypocrisy to celebrate PWDs but on the other hand, seek to alter their genes to prevent them from even existing.

I was born with mutated genes that caused me to be born with fractures. I can be said to have “inferior” genes because I was born with a short stature and countless fractures such that my childhood was spent in a Children’s hospital. But I was gifted with committed parents who believe in choosing life for me even when I was called a “fragile doll” by medical staff. At birth, I was deemed untouchable and no doctor would have given me a good prognosis.

As medical technology advanced, I had my first surgery at age seven. Now I have rods and metal plates in my femurs. The vicious cycle of more fractures, more surgeries and prolonged periods of rehabilitation dominated my childhood and secondary school years. Despite that, I graduated with a degree in Social Work and Chinese Language and am now a private educator with the ability to impact lives. I use a wheelchair for greater mobility and to pursue a better quality of life. Using a wheelchair helped me to travel overseas, not only for leisure but also for mission trips.

Education and technology prospered my soul and enabled my body to function at its optimal level. I learnt to swim to build muscle strength. My health record is better than any person without a disability because I choose to take responsibility for my life. Technology can help to improve my life externally. To use technology to tamper with genes is to tamper with nature. The human body is too complex to let us foresee the consequences of tampering with what is unknown. As it is, none of us can even control our every breath.

Doctors know my biology but they know nothing about my life to decide if my life is worth living. I have proven every doctor wrong that a seemingly grossly handicapped baby is now leading a life of victory!

If genes can be readily edited, what have I missed?

Don’t healthy people get into accidents and become paralysed? Are their lives no longer worth living?

A New Zealand holiday ended in a horrifying accident and life in a wheelchair. But Jean Ling tells On The Red Dot how she returned to adventuring and found true love (“Left half-paralysed in a holiday crash, she walks at her wedding three years on”; 9 June).

https://www.channelnewsasia.com/news/cnainsider/paralysed-new-zealand-car-crash-jean-ling-wedding-10398902

Don’t we love stories of fortitude and know not the boundless magnitude of human strength in times of trials? Are genetically healthy people exempted from the stresses of life and the sicknesses that assail us at different stages of life? Even children are not spared of cancer. In pursuing a more genetically “perfect” version of ourselves, it makes it harder for us to accept any sicknesses or defects caused by accidents or old age.

Finally, children are gifts, not products. MGRT reduces people to their genetics. For people like me who have a genetic disorder, MGRT signals strongly that those who have “defective” genes are not welcome in our nation. Will these therapies be so costly that they exclude the disadvantaged, and may even exacerbate already existing domestic and global socio-economic inequalities? The moral cost of MGRT cannot be justified, no matter how noble the intended goal appears to be. Surely, we can put our limited resources to greater use.

My parents did not pass on defective genes to me. My late mother passed on perseverance and courage to me, to live a life that shines for others.

Let us create a society that looks to the welfare of children first, above the limitless desires and worries of adults. 

Yours Sincerely,

Serene Ho (Ms)

14 June 2018

I received an acknowledgement from MOH on 19 June 2018.

Dear Ms Ho,

Thank you for your submission to the BAC’s consultation on mitochondrial genome replacement technology.

Your personal story is inspiring, and I think it is so precious that in this debate, we also get to learn the perspective of individuals like yourself who live with a genetic condition. Thank you for taking the time to share your views with us, and for allowing us to publish your response in the final report. Secretariat will forward your response to the Committee, which I have no doubt will give careful consideration to your valuable inputs.

With warmest regards,

Charmaine 

Charmaine Chan
Bioethics Advisory Committee Secretariat

Harbourfront Centre, 1 Maritime Square, #11-23, Singapore 099253