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

No longer trash of society!

Too many quotable quotes in this favourite book of 2018, "Trash of Society" by Jason Wong. Concise, humanely written from a heart that pursues God. I "chanced upon" this book when I was down and this book was God-sent to lift up my spirit. Like Jason, my 11 years senior in my junior college, I want to claim salvation for all my family members. I want to pursue the heart of God and let Him multiply the little I have!:D  

"As long as I was willing to be broken, God could multiply. He said, the little you have is enough. I use the small things - the weak things, the foolish things - so no one may boast. If you keep what you have, you are only five loaves and two fish, but if you give them to Me, I will multiply them and use you to do the impossible."

"Do not forget the children of prisoners. Do not forget them because I (God) remember them." 

"I call the church to set prisoners free. I didn't call the government to set prisoners free."

"Faith energises, fear paralyses"

"Money we don't have, only faith - can or not?"

"Man only wants to solve their own problems but God wants to stop the cries of the children/people."

Fear of failure causing stress in our society

Having taught primary and secondary school students as a private tutor for 17 years, I cannot agree more with the River Valley High School student that exams teach us to study independently, which will be useful for work in the future (MOE taking steps to 'loosen up' education to reduce stress, says Ong Ye Kung; May 30).

It is commendable that he takes tests as opportunities to do better the next time.

I welcome the steps taken by the Ministry of Education to introduce more flexibility to our rigid education system that seeks to measure success based on academic results. Although lower primary pupils have no examinations till the end of Primary 2, they still have many bite-sized tests.

The fear of failure is the cause of stress in our society. Many students today dare not even try. They are terrified if they do not do well in tests, as if academic success determines their destiny.

Many students lack perseverance but expect instant gratification. They expect to be spoon-fed the answers to tests because we have been spoon-feeding them all this while.

For too long, we have emphasised certificates above character, knowledge above lifelong learning and efficiency above values.

Successful people take personal responsibility for their learning and take pride in their work.

We need to regain that tenacity in life and pass it on to the younger generation. Let us not limit their growth by determining the kinds of stress they can or cannot take.

https://www.straitstimes.com/forum/letters-in-print/fear-of-failure-causing-stress-in-our-society

Edited out :

Students buy into the ideologies of the west because we have not trained them well in critical thinking. What do we mean when we say we want to better integrate the lesbian, gay, bisexual and transgender community? We have already divided our nation by labelling people and putting them into a community. How does that contribute to the common good of our society? 

I lived to see my kid live for eternity!

Life has become too exciting not to be recorded. 

On 29 May, Tuesday, Vesak Day, I met up with a friend and the friend from my ex-church and we spoke quite a bit about healing and deliverance. She prayed for me. 

On the way home, I texted a friend from Ellel Ministries.  She called me and did deliverance with me over the phone for nearly 3 hours, from 830+ pm to 1130+ pm.

I was totally exhausted. I am so grateful to her that God allowed her to do it for me because by the time I have proper healing and deliverance, that would be 2-3 months later?

I intend to do it this year.

She was really good! Good as in proclaiming God's word with His authority can only be good!

I slept well, though I still woke up 2-3 times in the night, up till today.

Yesterday, my mind was trying to reflect on what went wrong, what went right, what is actually happening...Then I realised that I should be meditating within my heart on my bed, not thinking and thinking in my mind. No wonder I couldn't sleep as well!

On Tuesday night, I slept as if my body was covered with the blood of Jesus and His angels guarded my body.

Yesterday I slept with no fear. Just mind too active when I woke up in the night and it was harder to sleep again.

Today I learnt that next Tuesday there would be a bigger group praying against abortion. I was all eager to go. I even sent the message to two group chats and left for lessons.

I did wonder if it was ok for me to go when I am vulnerable now. Two friends in this ministry differ on whether I should go. I did ask God and was thinking that if I am free from attacks these few nights, I would go for this Saturday's prayer.

I walked up the slope to kids' house, a path that I used for four years. 

I walked very near the grass patch, because there were cars passing by.

I saw this Comfort Taxi coming down but it was getting too near me.

Then it stopped so near me that it was really unbelievable that it didn't hit me.

As miraculous as the time when a car knocked on my big wheels twice in 2015. If the impact had been great, I would have been on the road.

I was about to abandon my bag and chair and cling to the grass.

Taxi driver wound down his windows.

He seemed shaken. He said he could not see me when it was unlikely. I sensed that he was not concentrating on driving. He looked tired.

He said sorry.

I was abnormally calm. I didn't even scream when the car was so near.

Maybe because the car was slow?

I think I was very sure that I would be fine.

Wow, if it was not God, I don't know who could give me that assurance.

I went on to teach my two kids. It didn't sink in that I just escaped death/injury.

Until I led my girl in a prayer to receive Christ. She prayed for protection over me.

That was when I realised that Satan had changed his tactics.

Panic attacks didn't stop me. Headaches and interrupted sleep didn't irritate me.

Now use a driver to try to scare me.

Wow, how long, Lord?

Not going to prayer meetings would stop the attacks?

I am sick of his scare tactics.

I'm pissed off!

If I live, I live to Christ.

If I die, I am with Christ.

But I asked for a long life, satisfied in Christ.

I have yet to see God's promises fulfilled!

I will live, by God's sovereign will.

I lived to see my kid live for eternity!

Hallelujah!

Lord, grant me patience for all that I am enduring!

"Take the sword of the Spirit, which is the word of God." by C.H Spurgeon

"That Word of God which could convert you, can convert anybody; if it could kill your despair, it can remove another man's despondency; if it has conquered your pride and self-will, it can subdue the like in your children and your neighbors. Having done what it has certainly done for you, you may have a full persuasion that, before its power, no case is hopeless. Wherefore, see to it, that you use from this day forth no other weapon than the sword of the Spirit, which is the Word of God...

Do not merely say, "I will keep Satan out of my family by bringing up my children aright", but go to the Sunday-school, and teach other children, and so carry the war over the border...

But I pray you do not let your love of the Bible end there. With a soldier in war, a sword is not meant to be hung up in the tent, nor even to be flourished in the air; but it is issued to be used. Nor are we to push this sword into a sheath, as many do who take the Bible, and add so much of criticism, or of their own opinion to it, that its edge is not felt. Many men use their low opinion of inspiration as a scabbard into which they push the Bible down. Their vast knowledge makes a beautiful scabbard, and they push down the sword, saying, "Keep still there! O sword of the Lord, rest and he quiet!" After we have preached our heart out, and men have felt the power of it, they make a desperate effort to imprison the Word in their unbelieving theory, or in their worldliness. They hold down the Word all the week with a firm hand, for fear its edge or point should wound them. It is the scabbard of culture, or philosophy, or of progress, and in this they shut up the living Word of God as in a coffin...

As quick as arm can move, drive texts of Scripture through every new fallacy, every new denial of truth, and spit the whole of them upon the rapier of the Word. It will be for your good to kill these doubts outright. Do not play with them, but fight them in real earnest. You will find that temptations also will come in hordes. Meet them with the precepts of sacred Writ, and slay even the desire of evil by the Spirit's application of the Holy Word. The washing of water by the Word is a glorious cleanser. Discouragements will arise like mists of the morning. Oh, that God's Word may shine them away with the beams of the promises! Your afflictions multiply, and you will never be able to overcome impatience and distrust except by the infallible Word of God. You can bear trial, and bear it patiently, if you use this weapon to kill anxiety. You will "stand fast in the evil day", and having done all, you will still stand, if this sword be in your hand...

No sinner around you will be saved except by the knowledge of the great truths contained in the Word of God. No man will ever be brought to repentance, to faith, and to life in Christ, apart from the constant application of the truth through the Spirit...

Our divine Lord in the wilderness was tempted of the devil. He might have fought Satan with a thousand weapons; but he chose to defeat him with this one only. He said, "It is written; it is written; it is written." He pricked the foeman so sorely with this sharp point, that the arch-adversary thought to try the same sword; and he also began to say, "It is written." But he cut himself with this sword, for he did not quote the passages correctly, nor give the whole of them; and the Master soon found the way to knock aside his sword, and wound him still more. Follow your Lord's example."
https://www.blueletterbible.org/Comm/spurgeon_charles/sermons/2201.cfm?a=1103001