Search

Since the birth of the first “test tube” baby, the use of in vitro fertilization (IVF) has undergone an enormous metamorphosis. Initially designed for blocked fallopian tubes, IVF has found a number of other clinical applications over the past 40 years. However, as the science has advanced, traditional norms of conception and parenthood have been challenged and reproductive health ethics, guidelines, and law struggle to keep pace. Controversies and debates have arisen within the law, public policy, and the meaning of family across societies and religious sects. This paper will highlight some of the current and complex social, moral, and legal questions surrounding the implementation and advancement of assisted reproduction including Cross Border Reproductive Care, Oocyte Donation and Consents, Oncofertility, Posthumous Reproduction raising fresh discussion and debate.

Background: Information-sharing practices, disposition of oocytes, and embryo management are at the discretion of the individual assisted reproductive technology (ART) program, donors, and recipients. Ideally, these practices and policies should reflect the information and decision-making needs of the people involved. The ART program that was the focus of this study has incorporated pre- and postdonation discussion of oocyte and embryo disposition into the screening and follow-up processes to improve overall satisfaction. To improve programmatic policy, we assessed how these discussions and the informed consent process were reflected in oocyte donors’ legal contracts. Methods: This retrospective chart review (n = 55) was designed to identify and assess discrepancies between donors’ consented preferences and their executed legal agreements with oocyte recipients. Results: Sixty-three percent of donors had legal contracts that were inconsistent with their medical informed consent. Of this group, 58% agreed ...

Aim: Issues surrounding egg donation informed consent have recently been spotlighted due to advances in medical genetics. We sought information on attitudes and desires of donors and recipients to craft a program policy on counseling, disclosures, and re-contacting participants. Methods: Between April 2003 and September 2006 we conducted a questionnaire-based evaluation in our oocyte donor program. Donors pre-donation (n = 265) and those undergoing the process (n = 60), and recipients either ante- or postpartum (n = 57), were asked about their desire to know/disclose obstetric outcomes (Question 1); willingness for contact in the event of a medical emergency (Question 2); and wish to know/disclose a liveborn's medical condition (Question 3). Results: Pre-donation questioning among all donors generally revealed reticence to Question 1 (31% [n = 83]), but were overall amenable with Questions 2 and 3 (83% [n = 220] and 83% [n = 219]). Following the donation process, no differences in Questions 1 and 2 were noted, but fewer donors were amenable with Question 3 (pre-donation 93% [n = 56] versus post-donation 38% [n = 23]; P

Fertility Preservation for Cancer Patients: “We Need to Foot the Bill” A 27-year-young G0 P0 female presented to the office for a consultation on fertility preservation after a referral from her oncologist with her friend as her sole medical supporter. She was distraught by a recent medical diagnosis of cancer, but leaned in as we broached the subject of possibly losing her fertility. We sat for about an hour discussing the likelihood of damage to her reproductive functioning and the options available to attempted to preserve her fertility.

Issues surrounding egg donation informed consent have recently been spotlighted due to advances in medical genetics. We sought information on attitudes and desires of donors and recipients to craft a program policy on counseling, disclosures, and re-contacting participants.Between April 2003 and September 2006 we conducted a questionnaire-based evaluation in our oocyte donor program. Donors pre-donation (n=265) and those undergoing the process (n=60), and recipients either ante- or postpartum (n=57), were asked about their desire to know/disclose obstetric outcomes (Question 1); willingness for contact in the event of a medical emergency (Question 2); and wish to know/disclose a liveborn's medical condition (Question 3).Pre-donation questioning among all donors generally revealed reticence to Question 1 (31% [n=83]), but were overall amenable with Questions 2 and 3 (83% [n=220] and 83% [n=219]). Following the donation process, no differences in Questions 1 and 2 were noted, but fewer donors were amenable with Question 3 (pre-donation 93% [n=56] versus post-donation 38% [n=23]; P0.01). Overall, recipients were amenable to all three questions (88% [n=50], 74% [n=42] and 88% [n=50]), with similar responses both ante- and postpartum.All programs participating in gamete donation should establish a comprehensive disclosure policy, including consents that are built upon effective lines of communication between clinical staff and legal counsel assuring that parentage, relinquishment, and re-contact information in donor-recipient agreements are consistent with clinic consent documents and desires of both parties; All decisions must be adequately documented and honored and long-term counseling needs should be addressed.

This Article analyzes existing legal protections for the confidentiality of information collected through genetic screening or genetic monitoring in the workplace. It notes that there are a variety of protections, such as ethical codes for occupational physicians, statutes protecting health care information in the hands of the employers, and tort, contract and constitutional principles. It describes defenses to suits based on improper disclosure of medical information. The Article then analyzes legal bases for employee and third party access to the employee's genetic information. In response to gaps in existing legal protections, it suggests parameters for a model law protecting the confidentiality of genetic information collected in the workplace.

Objective To assess information needs and decision making among couples donating embryos for stem cell research from outside programs. Design Qualitative and quantitative interview report. Setting Academic medical center. Patient(s) Forty-five couples donating embryos to stem cell research. Main Outcome Measure(s) Likert scales were used to assess whether participants regarded embryos as children and whether donation was analogous to organ or blood donation. Use of counseling, consideration of disposition options, and value of the interview were assessed. Recorded responses were analyzed for themes. Result(s) The average length of cryopreservation was 4.8 years. Twenty percent of the embryos were created with donor gametes; 53% of respondents viewed embryos as completely different from children; 31% and 27% considered embryo donation "identical" to organ and blood donation, respectively; 47% chose stem cell research to help others; 96% had not sought counseling in making their decision; and 20% were told they could not donate embryos to other couples. Conclusion(s) Although many couples had questions/concerns regarding disposition, few sought formal counseling. Outside programs may unnecessarily limit the option of donation to other couples. Guidelines are needed to ensure that couples making embryo disposition decisions are properly informed of all options, that third-party gamete issues are addressed, and that psychological support is offered.

THE LA ST HA LF-CEN TU RY has seen an explosion of knowledge about the genetic basis of disease: over 10,000 genes have been isolated (OMIM, 1999), and hundreds of genetic tests are clinically available. It was more than a 100 ago that Gregor Mendel described the essential attributes of inherited characteristics of plants, which he called “particulate factors.” However, it was not until the turn of the 20th century that the word “gene” was coined (by the Danish biologist Wilhelm Johannsen, in 1909) to describe the inherited elements. The inheritance patterns of traits Mendel observed were, in the 1940s, attributed to DNA (by Avery, McLeod, and McCarty), and, in 1953, Watson and Crick elucidated the structure of the DNA molecule. Continuing to build on genetic discoveries, scientists have made great strides in sequencing the human genome and understanding the basic molecular processes of all living things. Despite the promises of the Human Genome Project and others to improve health presumably through gene therapy (Verma, 1997; Anderson, 1998), the most widespread application of human genetic discoveries is the developm ent and use of genetic tests to diagnose or predict illness. Genetic information gleaned from tests provides not only risk factors for disease onset, but may also provide inform ation about immutable health characteristics. Genetic information only tells part of an individual’ s health risk profile. Genetic tests deal with probabilities and percentages, generally not certainties. For example, even if a person tests positive for a particular mutation, they may never develop the disease associated with that mutation, even though their risk of doing so is increased. Genetic tests cannot predict the severity of disease. Down’s Syndrome, for example, is easily discovered by chromosomal analysis, yet there is no way to predict the degree of mental or physical disability of the child. And no test can predict the onset age of Huntington’s disease (an adult-onset degenerative nerve disease). New genes are discovered almost every week, and each holds the possibility of prediction. Tests are available for diseases ranging from heritable breast cancer (associated with mutations in BRCA1 and BRCA2), to Fragile X Syndrom e (among the most common inherited forms of mental retardation in males; Warren and Nelson, 1994). One does not choose to be 30% more likely to get cancer, but one has to live with the probabilitie s, possibilitie s, and predictions of genetic testing. It is powerful inform ation, and potentially useful to powerful institutions : military, law enforcemen t, employers, insurers, biotechnolo gy and pharmaceu tical companies, researchers , educational institutions , courts, the governmen t, and others. Although attempts have been made to regulate use of genetic inform ation in all these areas, the longest-run ning policy focus has been insurer use of genetic informatio n. This study examines the impact of legislation on insurer use of genetic informatio n, as seen through the eyes of the insurance commissioner.