Question

Tracy already had 3 children when her 4^th child (Samantha) was born with a number of genetic abnormalities including curvature of the spine.

An abnormality on chromosome 15 was identified and Tracy and her husband received genetic counseling. They were told that the disorder was rare and that any future children had no more than a 1 in 200 chance of being affected.

Ove the next 11 years, Tracy had 4 other children. All were tested for abnormalities which proved negative. Tracy’s 8^th and final child (Colin) was a small baby but otherwise appeared quite healthy.

After about 6 months it became apparent that Colin was not thriving and on a couple of occasions he was admitted to the hospital because he stopped breathing. Tests revealed that he was suffering from a curvature of the spine called spinal muscular atrophy. He was discharged home as no treatment could be offered. Colin died two weeks later at age 20 months.

An investigation was undertaken and it became apparent that Samantha had also died of the same thing but this information had never been passed on to their parents. If would appear that the pathologist involved at the time believed that the spinal muscular atrophy was directly related to the disorder on chromosome 15 rather than a separate condition.

Tracy and her husband claimed that they had been aware that Samantha had died of spinal muscular atrophy and that any subsequent children had a 1 in 4 risk of also having the condition. They would either have an antenatal screening specifically for this condition and a possible termination of the pregnancy.

Questions:

1- What are the ethical issues surrounding this case?

2- Is there any obligation on the part of the hospital/physicians caring for this couple to ask them to consider not having further children? Why or why not?

3- Do you believe this was a case of wrongful birth? Please discuss why or why not you feel this way

Answer 1

1- What are the ethical issues surrounding this case?

An investigation was undertaken and it became apparent that Sam had also died of SMA, but this information had never been passed on to her parents. No doubt the pathologist required at the time trusted that SMA was specifically identified with the confusion on chromosome 15 as opposed to a different condition.

2- Is there any obligation on the part of the hospital/physicians caring for this couple to ask them to consider not having further children? Why or why not?

Tracy and her husband claimed that had they been aware that Sam had died of SMA, and that any subsequent children had a 1 out of 4 danger of likewise having the condition, they would either have had antenatal screening explicitly for SMA and a conceivable end.

3- Do you believe this was a case of wrongful birth? Please discuss why or why not you feel this way

The healing center acknowledged risk (carelessness) for the unjust birth of Colin and the case was made due with £22,000.

OR

Solution;-

SMA is a rare neuromuscular disorder characterised by loss of motor neurons and progressive muscle wasting, often leading to early death. The turmoil is caused by a hereditary deformity in the SMN1 quality, which encodes SMN, a protein generally communicated in all eukaryoticcells (that is, cells with cores, including human cells) and important for survival of engine neurons. Lower dimensions of the protein results in loss of capacity of neuronal cells in the front horn of the spinal line and ensuing framework wide decay of skeletal muscles.

Spinal strong decay shows in different degrees of seriousness, which all share for all intents and purpose dynamic muscle squandering and portability hindrance. Proximal muscles, arm and leg muscles that are nearer to the middle and respiratory muscles are influenced first. Other body frameworks might be influenced too, especially in early-beginning types of the turmoil. SMA is the most well-known hereditary reason for newborn child demise.

Major ethical issues are:

1) Colin was discharged from the hospital as no treatment could be offered , but he could be kept in the hospital for further management.

2)In the center of ethical questions is the comprehensiveness of information provided to the couples or patients and counseling them about results and making informed educated decisions.

3)Beyond the mental results of accepting hereditary testing data are the potential effects on the family—the person, as well as the accomplice, guardians, grandparents, kin, and offspring of the individual being tried or screened.The diagnosis of a genetic condition or the results of a genetic test often have repercussions for future childbearing decisions as well, although this is only one of many components of genetic counseling.

Yes , Hospital has a commitment for this couple to request that they consider not having further kids.

One of the objectives of hereditary advising is to ascertain and impart dangers (Holtzman, 1989). Hazard correspondence, in any case, involves undeniably something beyond precisely deciding the numerical hazard and transmitting that data to a customer.

Customers go to the directing session with experiential, passionate, religious, and situational worries that will impact their recognition and understanding of hazard as well as the way in which they get the data exhibited to them. Communicating, understanding, interpreting, and using information on genetic risk involve a "series of complex, multidimensional processes with major rational and nonrational components.

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