Year 2002, Michelle and Jayson Whitaker, parents of Charlie Whitaker, afflicted with a rare blood condition called Diamond Blackfan Anemia appeal to the Human Fertilization and Embryology Authority to consider approval of the 'designer baby' concept to save their sick child. Diamond Blackfan anemia is a rare, potentially fatal genetic disorder that requires regular, painful treatment. Stem cell transplantation from a sibling with a perfect tissue match is the only viable treatment option.
Permission was initially denied, as there was no proper evidence to support the use of the technique at that time. The parents would not give up. Thanks to their perseverant efforts. It was decided to allow for genetic screening of the embryo to prevent the birth of another child with the same genetic disorder in the family. This however meant that they were denied from testing the embryo with the hope of saving their first child or towards finding a perfect genetically matched donor.
This rule was later relaxed that allowed the Whitakers to travel to the US for treatment. June 2003, Jamie Whittaker was born. Jamie was selected genetically while he was still an embryo. Two or three of his cells were tested when he was just 3 days old, before his embryo was transplanted to Michelle.
At the time of delivery, umbilical cord blood, a rich source of stem cells was harvested and stored for potential life-saving stem cell transplantation. Two-year-old Jamie, called saviour sibling, is now a genetic match to his elder brother. Charlie however is now in remission and so far, treatment has not been necessary.
The birth of Jamie, no doubt brought immense joy and happiness to the deserving couple, but along with it raised a cloud of controversy regarding the birth of 'designer babies', born to aid a sick brother or sister.
The second case, where Raj and Shahana Hashmi were granted permission to use the tissue typing procedure by the HFEA re-ignited the debate about the creation of designer babies for a second time. The embryo selection was targeted to serve a dual purpose, prevention of subsequent child with thalassemia, a genetic disorder of the blood cells and helping Zain, their elder son, a thalassemia sufferer.
Thalassemia is a potentially fatal genetic disorder, characterized by defects in hemoglobin (oxygen carrying pigment in blood) synthesis. It is divided into two types, a-thalassemia and b- thalassemia depending on the defect involved. Varying degree of anemia, heart failure, fluid accumulation in the body, bone defects, liver and spleen abnormalities are common presenting features. In worst cases, it can lead to stillbirth. It is now possible to identify such defects in utero through a technique called preimplantation genetic diagnosis. At-risk individuals can seek the health of genetic counselors to help in further assessment and planning of treatment.
With the ever-increasing options for childbearing such as artificial insemination, in vitro fertilization (IVF) and Intra Cytoplasmic Sperm Injection (ICSI) and the increasing demand for such saviour siblings from parents, members of the Human Genetics Commission recommend that there is now a need to develop a standard system to ensure that such siblings are adequately monitored to protect their physical and emotional well-being. The recommendation is based on issues at national level rather than on individual cases.
Issues have also been raised against the possibility of visualizing saviour siblings as a spare part bank. The concept is however, very different from creating babies with desired characteristics for eye, skin color etc or for designing clever children. The maximum possible extent to which the cells or tissue of a child can be used to benefit another individual has to be taken into critical consideration.
The harvest of umbilical cord stem cells at the time of delivery is not associated with any known adverse effects. Bone marrow aspiration is however surrounded by some controversy, as there is a small amount of associated risk. Once the principle of creation of children to save the lives of their sister or brother is made legally, medically and ethically acceptable, it might even be possible to consider organ donation in a broad prospective.
Even if such techniques were to be allowed in the near future, the health, well-being and the family relationship of the 'saviour sibling' should deserve the utmost priority. Concerns regarding the dignity of the created child and discarding other embryos unfit for the primary purpose do exist. The long-term health consequences of children born through pre-implantation genetic diagnosis (PGD), has also to be borne in mind. More research is clearly indicated to monitor the development of such children.
The scientific members have warned against the provision of such services as a common clinical practice, to any family with a sick child. All other treatment options should have been explored before preimplantation tissue typing can be carried out. Parents should be given the right to take their own informed decisions, based on the available scientific techniques.
In short, an adequate level of balance has to be established between reproductive autonomy (the right of parents to make their own decisions regarding pregnancy and reproduction) and the best interest of the society that would hold good for all ages.