Creating the Perfect Human Race: How Far Will We Go for Designer Families?

• DOI: http://doi.org/10.1111/fcre.12328
• Published date: 01 January 2018
• Date: 01 January 2018
• Author: Lisa Fenech

CREATING THE PERFECT HUMAN RACE: HOW FAR WILL WE GO

FOR DESIGNER FAMILIES?

Lisa Fenech

1

Genetic modifications in humans is a fast-advancing field of science, with very little legal regulation. Scientists recently have

developed a technique, clustered regularly interspaced palindromic repeat (CRISPR), which will forever change this field.

Before CRISPR, all methods were too expensive and time consuming to facilitate editing human genes. CRISPR is faster and

cheaper, making it a very real possibility for all. Since the discovery of CRISPR, research on human embryos has begun, with

a success rate showing that creating a genetically perfect family is very real. In 2015, all federal funding for human genome

modifications was banned, leaving little federal control. This Note proposes a model statute that allows for research while pro-

viding restrictions to prevent harm.

Key Points for the Family Court Community:

Genetic modification of the human genome is an unregulated field that, before CRISPR, was not an issue because all

methods were expensive and time consuming.

The development of CRISPR opens the door to human embryo modifications and the ability for parents to genetically

predetermine their child’s characteristics and health, which raises many moral and ethical issues.

Close regulation of this research is needed to prevent off-target mutations that cause irreversible damage or disease to

the human genome, which is then passed through the generations.

The elimination of diseases in children and adults will be permitted, because this is one of the major benefits of this

technique, but generational changes are to be closely monitored or prohibited.

Keywords: Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR); Gene Modification.

I. INTRODUCTION

When Layla, a one-year-old girl with leukemia, was unresponsive to chemotherapy and radiation,

the last thing her parents thought would help her was gene modification.

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Researchers were planning

to start preliminary trials on patients within the next year, but when they learned about Layla, the

opportunity could not be passed up.

3

Layla had undergone chemotherapy and a bone-marrow trans-

plant within weeks of her diagnosis of acute lymphoblastic leukemia at just three months old.

4

These

techniques are generally successful in older children who are diagnosed, but Layla was too small and

too sick to prevent relapse.

5

Layla’s parents told her doctor to try anything to save Layla: “[they]

didn’t want to give up on [their] daughter.”

6

Layla’s doctor e-mailed Waseem Qasim of University

College London, who was part of the team looking to start preliminary gene therapy to treat cancer.

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Dr. Qasim agreed to help.

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He began development of modified donor T cells to replace Layla’s.

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Dr. Qasim used a form of molecular scissors called TALEN (transcription activator-like effector

nuclease) proteins to change Layla’s genetic makeup.

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The procedure was successful and Layla,

even though not deemed cancer free for the rest of her life, has not shown any cancerous cells since

the procedure.

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The gene therapy Layla underwent was only the second human trial, and it saved

her life.

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Gene modification techniques can save numerous lives from deadly and debilitating dis-

eases, as it did for Layla.

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The TALEN technique that Dr. Qasim used to save Layla’s life is one of many gene-editing tech-

niques on the market.

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However, all of these techniques are expensive and generally take extensive

time to be successful.

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The development of the technique CRISPR (clustered regularly interspaced

Correspondence: Lisafenech22@gmail.com

FAMILY COURT REVIEW, Vol. 56 No. 1, January 2018 150–164

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C2018 Association of Family and Conciliation Courts