Ethical Considerations in Managing Sickle Cell Disease

It is a genetic disorder related to the blood and can be transmitted from parents to offspring. one type is most common that is known as sickle cell anaemia. Sickle cell anaemia is inherited disorder and in this disease the body produce abnormal shaped of red blood cells that look like sickle or crescent moon. These sickle or crescent moon shaped cell stuck together and block small blood vessels than blood can’t get where it should, and then it can lead various problems. Around in the age of 5 to 6 months the problems begin and various harms related to health may developed, such as invade of soreness, paralysis, inflammation in feet’s and hands, as people get older long term pain may develop. Sickle cell anaemia is caused when mutation occur in a gene that tell the body to make an essential protein called haemoglobin. Haemoglobin permit the red blood cell to convey oxygen from all portions of the body and lungs. To get SCD, you must have two altered genes of haemoglobin, one from each parents. If only one of these genes are existing, then you have sickle cell trait, which is extremely minor. Sickle cell anaemia is the most common type of SCD where two sickle cells genes are present. HOW THEY CAUSE SICKLE CELL ANEMIA? The proteins (haemoglobin) that are vital the sickle cell genes affect the fabrication of that proteins. These proteins are existing in red blood cells and also a part of blood. Haemoglobin transmits oxygen and also give red dye to the blood. Normal haemoglobin is called HbA but in the presence of sickle cell gene it synthesis abnormal haemoglobin. Then their function is different from HbA. underneath certain circumstances, HbS change the figure of red blood cell as a substitute of the normal shape. they become crescent moon or sickle shaped. This is called sickling situation, which cause infection, dehydration, less oxygen and acid. The sign and symptoms of the sickle cell anaemia include. Paleness, weary, giddiness, short of snort, petulant, heartbeat is fast, worry paying attention. Sickle cell disease is known as a group of ailment characterized by the occurrence of one abnormal haemoglobin and haemoglobin S. world health association conferring the 7% of pregnant women and 5.2% of the world population can convey abnormal haemoglobin gene. in sub Saharan Africa SCD is much ubiquitous. The genotype characterized that in the population of sickle cell disease Hb SC and Hb SS is dominant. Ghanaian studies rumours show that in the population carrier rate is 30% and 2% of Ghanaian new-borns have sickle cell disease.

ETHICAL ISSUES IN THE DAIGNOSIS OF PRENATAL AND SELECTIVE ABORTION

In 1970s prenatal diagnosis was familiarised on the ground that genetic counselling eliminates the mother’s anxiety, also the children who are born with certain disease decreases its quantity and exceed the financial gains to society. Selective abortion and the diagnosis of prenatal have some benefits like the alleviation of anxiety, avoidance of unnecessary pregnancy cessation, information to hopeful parents about the unborn child. A number of ethical dilemmas stand up. Some of these ethical issues. Such as selective abortion and moral justification of PND, also the time of pregnancy and technique of PND it is offered. The right of parents against the right of society concerning pregnancy about decision. Selective abortion and PND risk and its benefits and the ethics of heritably incapacitate fetus abortion will be considered.

ISSUES RELATING TO PRENATAL DIAGNOSIS TECHNIQUE

Usually, PND trusts the invasive technique chorionic villus sampling or amniocentesis, to take material of fetus for testing. CVS and amniocentesis are connected with a 1 to 3% of miscarriage risk involving to the process. In the earlier of pregnancy CVS can performed and then amniocentesis. Though, it conveys a risk of fetal injury. Some parents would prefer diagnosis at earlier stage because to reduce the psychological effect of abortion. Conversely it may come at the higher risk of inducing abortion of a normal child which ethical conundrum generates.

There is the opinion of some geneticists that the individual which are expected should agree to an abortion. If the consequence of the test is turnout to positive. Before the PND offered. WHAT IF THE PARENTS GO THROUGH THE PRENATAL DIAGNOSIS BUT THEY ARE CHOOSES TO HAVE NOT ABORTION? OUGHT SUCH MOTHER PERMITTED TO HAVE PND? AFTER THE TESTING PROVIDING INFORMATION ABOUT THE RESULT DOES THE MOTHER UNDERSTAND IT? IS THIS ACCURATE THAT GENETIC COUNSELING SHOULD BE NON DIRECTIVE? Others and counsellors of genetics have dought about whether it possible practically or theoretically to have non directive counselling. Some dispute presumes an implicit bias to selectively abort fetus deemed imperfect.

Program leaders implicitly be wont to assess the achievement of PND by undeclared protective catalogue. The abnormal unborn babies are prevented from the coming birth detected by PND. Then how genetic counselling can non directive and offer free choice for mothers? The non directivness is point out by the fact that the action of information that are given on the infirmity and fetal deficiencies within medical setting with being offered abortion as a substitute creates abortion itself a live option.

SELECTIVE ABORTION AND PRENATAL DIAGNOSIS (CAPITAL PUNISHMENT FOR PARENTAL ‘’CRIMES’’)

The recent law of abortion in Ghana legalized that dismiss pregnancy if severe disease or physical abnormality occur. Though law does not define the severe.it allows termination if pregnant women have high risk. Consequently, on the basis of maternal psychological sorrow the law support selective abortion. Whereas in selective abortion seem some open-minded policy as a moral success that evade distress by receiving rid of abnormal fetuses. if prenatal diagnosis has only one purpose to treat and identify postnatal or prenatally abnormalities, there will be a very slight objection, if any one in all. Unfortunately, maximum PND is done for identification and to selectively abort abnormal babies, generates ethical dilemmas.it will seem though as unborn child with genetic abnormality has been punished to capital punishment for a crime she or he did not commit. The question gets up whose fascination does serve PND, is it parents, society, or unborn child? If PND leads to postnatal or prenatal treatment, then obviously the child interest has been aided subsequently the goal will be to give healthier life for that child.

The influence of abortion connected to psychology subsequent that prenatal diagnosis is well documented. These are emotionally destructive consequences of living children as well as their parents, depression, anger, guilt other condition that are painful. One author put, for women’s and their partner, the choice subsequently the prenatal diagnosis of a severe genetic weakness that to terminate pregnancy can be distressing. If in life SCD was not well-suited or not existed acceptable treatment, there would be less ethical dilemma.

PREGNANCY DECISIONS (THE RIGHT OF PARENTS VERSUS THE RIGHT OF SOCIETY)

For women or couples whose prenatal diagnosis examination disclose positive consequences means demonstrate abnormality. A number of public aspects, stress, religious and moral determine the choice made.in accumulation emotional consequence of deciding that the child who have SCD can abort. a situation that are non-compatible for life at sensible feature. especially for that child that was wanted can have a culpability toll on couples and pregnant women. In balancing the privileges of couples versus the privileges of society in decision regard about the pregnancy termination and continuation, can an unwilling mother to abort the child that are affected by forced.

SOCIETY ETHICS REGARDING SELECTIVE ABORTION

One of the reason for entrance to abortion when PND first accessible in some justification to evade the birth of those child who have severe infirmity. According to the specialists of frailty, if the PND using in this way it is against discriminatory with disable people and infers that their lives are deliberated less precious of the people who are not disable. In some cases, there are various people who are living with disability and they are contributed more in society than many who are not disable. What if a test that are related to the genetic indicated that Stephen Hawking’s parents would have a child who will later develop disability? In another way, would a mother abort fetus if she knew about her unborn child would become despite a serious disability?

In the recent time, sickle cell disease has an admissible feature of life and considerable life probability in spite of the contests in loving for person with the disorder. When the society chooses SCD for the selective abortion of a fetus, it has selected the choice of convenient, not essentially the one who are the best. Regrettably, that choice increases a countless of ethical concerns.

CONTROLING SICKLE CELL DISEASE-THE OPTION

From the previous, prenatal diagnosis is a questionable option and selective abortion is as well in controlling sickle cell disease in Ghana.one Ghanaian haematologist puts it,

I WILL NOT SPONSOR FOR SELECTIVE ABORTION AND PRENATAL DIAGNOSIS.YOU WILL NOT KNOW WHO OR WHAT YOU ARE ABORTING ‘’WE BELIEVE ON THREE LEVEL THAT CAN CONYROLLED SICKLE CELL DISEASE THAT ARE MORE CONSISTANT WITH GOOD CONSCIENCE AND ETHICAL PRINCIPLES THESE ARE PRECONCEPTION STRATEGIC REPRODUCTIVE CHOICES AND GENETIC TESTING, EDUCATION AND PRENATAL DIAGNOSIS FOR CARRIER COUPLES.

PRECONCEPTION GENETIC TESTING AND STRATEGIC REPRODUCTIVE CHOICES

EDUCATION FOR CARRIER PARENTS

In this level dilemma and greatest ethical challenges occurs. However, the options are clear. When the probable parents are unaware of their carrier prestige, and until birth there are no problem. The pregnancy is naturally go on until birth or in the case may be to loss the fetus. when the prospective parents know about their carrier status that real problem occur here. should these couple undergo PND? We have already mentioned the PND assistances. We do not favour SCD selective abortion because we are convinced of a far well diagnosis for most children who are affected in the recent era. We trust that the fetus genetic makeup must not have the final say of its purpose. The test consequences should arm parents with information to make to care for their kid. They need current information and relevant on how to care their child in life various stages. in this concern screening of neonatal must also be portion of the basic services of health in Ghana. It is noteworthy that in with this line, the service of Ghana health has taken the stage to a countrywide programme of neonatal screening. Relationship with support groups and families who have cared effectively for SCD children is supportive and we urge it. families want to identify their surroundings to inhibit thrilling temperature and bacterial infections. Families want to confine the availability of all conveniences where they can get care for their kids. Vaccination for bacterial infection.it is our conviction that the good consequence got by others caring for children who have sickle cell disease is reproducible in Ghana with meticulous attention to the care of children who have sickle cell disease.

HOLISTIC MANAGEMENT OF PERSONS WITH SCD

The child who are born with sickle cell disease have particular necessities and want a broad care profile organized into non-medical and medical services and self-management plan.in instruction to care of sickle cell disease people, the holistic method that includes a multi-disciplinary team of well-practised experts, and well clear public support scheme that meets the mental, physical, emotional, financial desires of patients with SCD is required.

A broad medical care is the greatest plan and it is coordinated by the group of hematology.it concentrations on providing the medical care of grown-up and also the care of specialist when the requirement arises and providing general paediatric as well a vital part of medical care is pain management to avoid crisis. Most are non-steroidal anti-inflammatory drug and acetaminophen are used. For SCD patient blood bank support is important and also nutrition as well. Vitamin and folic supplements are useful.

Non-medical services contain psychotherapy (having problem in school, family and work) for joint problem physiotherapy, peer parent support groups and patient parent information, vocational services as well as job training.

For controlling sickle cell disease, the option offered on these three levels provide avenues that we believe are ethical, fair to all parties and effective cost.

CONCLUSION

To guide the society scientist, have ethical and moral responsibility with the insights that scientific knowledge affords.

SCIENTIST NOW DETERMINE THE LIFE QUALITY THAT SHOULD ALLOW THE SOCIETY, AND THEY PROGRAMME SOCIETY INSIDIOUSLY AND CAREFULLY TO ACCEPT THEIR GUIDANCE ON THESE MATTERS.HISTORY SHOWS THAT OFTEN SINGLE PERSON OR FEW PRESSURE GROUPS, CAN DECIDE THE SOCIETY GOOD.THE SOCIETY OF NAZI TRIBAL DECIDED TO GET RID OF HEBREW GENES AND PROGRAMME PEOPLE TO ACCEPT GOOD FOR SOCIETY PLAN.NOW WE MUST CAREFUL TO NOT ALLOW THE SCIENTIFIC PRESSURE GROUPS